Her Charm

Another beautiful walk along Green Lake...

Documenting my love affair with moss

Sleeping Lovers

Last night, I was a bad girl. I can't be good all the time. It's in my DNA, just ask my grandma. Trust me, she'll know what I'm talking about. She's a little naughtier than me, and boy is it her charm. There is no one like her! Sometimes I need to turn on some soothing music, uncork a bottle of pino, pour a glass, take a deep breath, close my eyes and tell myself that everything will be okay. Last night I listened to Lana Del Ray. If you've never heard her sing, she's mesmerizing.

I keep chugging along, but I have little blurps of exhaustion. I'm in a blurp. I think it's related to the fact that I can't run. One more day. Ugh. One more day, except I stretched in my sleep, which quickly woke me up in a rip of pain. A little tear of the stitches which were healing so well. Damn. Tomorrow I'll gauge whether or not I should run. I don't want to get the incision infected. That would be disgusting!

If I can't run, I start to fall apart. I get lethargic, my appetite grows erratic, my mood dives, and I start to feel sad for no reason. It's embarrassing.

Today I started my high doses again. I'm doing a 4-6, four days of high doses twice a day and then six days off. On the dosing days, I can only eat between 11:00 am-ish to 4:00 pm-ish. No smoothies, the antioxidants clean out the free radicals that need to carry the artemisinin into the cancer cells. My fare during dosing days is quite simple. That's why I need to run, I need to feel energized. Green smoothies and running are what keep my blood flowing and happy.

Oh well. This will not last forever. I am lucky to have this opportunity to conquer my brain cancer. Most who have come before me have not been so fortunate. That's what I have to keep remembering. I'm a lucky one.

Can't They Feign Interest?

This photo is of the only thing that really put a smile on my face today. I'm down. It's been a long time since I've felt this sad.

Truth be told, in my doctor appointments yesterday, I didn't even whisper a word of my "alternative" protocol. I didn't argue, or give off any sort of attitude. I listened to what they had to say, and asked a few questions. They did not care that I haven't had a seizure in over 5.5 months, they want me on medication. They did not care that my brain tumor had scanned as "stable." They did not smile, they did not encourage. I'm now sure that it must say, "stubborn cuss" in my file because I have refused seizure medicine, and I have refused radiation. In my main meeting I told the oncologist that I'm not necessarily against seizure medicine, or radiation, I just don't feel like it's necessary at this time. He was not amused, and strongly disagreed with my opinion. The doctors do not believe in little successes in my situation. They didn't care that I had been seizure free for almost half a year, or that my tumor has not grown in the past three months. How is that? How can they not care? Or even feign interest? How can they look at me, and handle me in such a way? They see me as a terminally patient that is going to die. How can they not throw me a bone and smile at the little victories?! They look at me and they see a dying girl, when no one else in the world sees me that way. They're looking at statistics, not at me, and that makes me frustrated. They need to look at ME, at my specific situation. I feel like the kid in class that causes too much trouble, so the teacher is seating me in the back and doesn't even care if I learn anything - I'll just be bumped up to the next grade for the next teacher to deal with it, or I'll "graduate" to death.

Crushing Dreams

The most frustrating thing about my doctors, is that they are truly waiting for me to die. They don't believe that there's anything that can be done to extend my life (and yet they stiiiiill want to radiate). When we discussed the lack of change in tumor size from October 25th, and January 13th, the doctors said it didn't matter. They care about the big picture. I understand that they're trained to compile the chronological MRI scans to review and observe changes, but when I held the tumor at bay for three months I didn't get a "Woop woop!" Nor did I get a, "Huh. Interesting!" Nothing. They said it didn't matter. Really? I would have appreciated a small smile, or a, "That's great! Not what we typically see here, and you can't extrapolate that to anything one way or another, but heck it's better than the opposite." It's all always so negative. They don't believe in me, they don't believe in us collectively as brain cancer fighters. I've shopped for oncologists, trying to find a better fit, but to no avail. The truth is that according to modern medicine, I'm supposed to continuously get worse as the tumor grows. I'm supposed to progressively lose my speech, my cognitive skills, my independence, my motor skills, my dexterity, my body will start falling apart, echk...everything. I'm supposed to be a good girl, a model patient, and to just give in to whatever my doctors recommend, and succumb to this cancer, and I can see how people do. When you're surrounded by professionals who handle your care, and they don't believe in you, it's hard to believe in yourself.

It is true, the brain tumor did not grow in the time period from October 25 to January 13, the doctors verified that fact today in our appointment. It's amazing how Danny, my parents and I, find this astounding fact to be something to rejoice in, and yet the doctors completely blow it off. It's sad, really. We should be jumping up and down, using this momentum to catapult us to the next phase of our Adios Hermie mission. But somehow, instead, I just feel defeated, and wiped out. I don't cry very often, probably only once every three months, but I can feel a swelling of emotion.

It was a long day of appointments, and there was a lot of information. The main point is that my oncologists, and all of my doctors for that matter, are in the business of crushing dreams. They all expect me to die, it's in their words, and worst of all in their eyes. My dream is to live, and today they just peed on that.

My First Video Blog

At the suggestion of a few friends, I have created my very first video blog! It is ridiculous, but I think I'll get better. This one is just a little introduction...

Damn it.

Top View Of My Brain

Well shit. Sorry to be the bearer of bad news, but we need to do more. You can see three areas of tumor cells in the lower right hand side of the image. We will have the official report on Wednesday which should compare this MRI with the last MRI, giving measurements. For now, we know because we've seen the compared MRIs for the past several scans, that the tumor area is growing. What we don't exactly know is how fast.

Time for a more serious protocol, perhaps the high dose sulforaphane. We're bummed, but not broken. Time to regroup and try more aggressive tactics.

Today, and tonight, maybe even all weekend, Danny and I will hide. I'll start my high dose artemether tomorrow morning until we can get our first shipment of sulforaphane pills.

It's promising, looking at the scans, that the growth of the tumor appears to have slowed down. Like I said earlier, we'll know more on Wednesday.

Lots of ups and downs, and I'm exhausted. Somehow I feel like I'm just now getting to the meat of this cancer. It's scary. I'd be lying if I said I wasn't afraid. But, I also have a calmness.

Over the past 24 hours as I was stressed, laying in bed with my eyes wide open, or in the MRI trying to be as still as possible, I kept my mantra, "We are all connected. With everything, we can give love." I still had a great day joking with the receptionist, and the MRI technicians. I genuinely smiled and laughed with the IV nurse, even when she couldn't find my vein and dug for ages. Somehow, my pain receptors were more numb than normal, and I was able to live in the moment, realizing that the world doesn't revolve around me, that with each person I came into contact with, has a life, and their own problems.

This cancer is my problem, but lots of people have burdens. I'm just lucky enough to have a rooting section. Another thing I'm grateful for.

Thank you. Thank you for supporting me. I appreciate all of the phone calls, text messages, emails, letters, comments, and all of the prayers. We will beat this. I BELIEVE!!

Happy New Year

I received the perfect gift on the last day of 2011. I was able to spend the morning with my brother, his wife Courtney, and their two children Isla and Wade/Toby (mom calls him Toby and dad calls him Wade). 

Courtney, Wade/Toby, me & Isla

 Isla & me down by Green Lake

My newest nephew Wade/Toby

This year has been a serious journey. It started as I finished up my final speech therapy sessions. Then, I had the chance to visit Jess & Dre in Abu Dhabi. In February, Dan and I shared vows beneath the Eiffel Tower during a 24 hour layover in Paris. In the spring I was able to create a presentation and share my brain cancer story with three different Rotary clubs around Washington. In the summer, I had the chance to visit my Polish relatives, and hug, bond, laugh, explore, and fall in love with them. Soon after, arriving home, Danny and I signed a legal marriage certificate. He's all miiiiiiineee!! Woo hoo!! Three days later, unrelated, I started having seizures and worried that my health may be declining. The next MRI showed our worst fears were correct. Little Herman, the tumor in my brain, was getting taller and fatter, faster than most of his peers. Instead of following my radiation oncologist's recommendation, I refused radiation and immediately started an alternative supplement program with artemisinin, completely changed my diet, amped up my cardio, and added strength training. Within 9.5 weeks I'd lost 19 lbs. I'm currently feeling wonderful, and I'll find out in less than two weeks, if my program is effective in keeping little Herman at bay. 

Along the way I've had friends support me with fundraisers, loving emails, text messages, cards, photos, hugs, and laughter. Even though I know that I am a person living with brain cancer I feel happier than I ever have in my life. I have everything to live for, and I am so grateful for all of your support. Thank you for helping me have another wonderful year! I enjoyed every single day. Even the challenging ones. I hope to share many more stories in the coming twelve months. 

Please have a fabulously hilarious and awesome New Year's Eve! Please be safe, and know that you're loved. So don't do anything stupid like drive drunk! :) 

Cheers to another amazing year!!

90-95% Of Cancer Rooted In Lifestyle/Environment

Almost Merry Christmas! Kind of, I'm two days early. It feels like Christmas (even though we don't have a tree). It's a combination of the smells outside (it's sooooo cold), and the lack of traffic outside our living room window. This is the first Christmas that Danny and I have had, just the two of us. I'm excited! It's not going to be the homemade cinnamon rolls that my mom always makes, but a green drink in pajamas will still be fun.

I finished the 4-4-4 last night and I'm so grateful. It was starting to make my stomach upset and the right side of my body was tingly. The tingles are good, that means it's working. My digestive system is still a little bit off, so I went for comfort food this morning. My old favorite toast with Dave's Good Seed Sprouted Bread, an egg (free range of course with no gross hormones in the chicken or its food) doused in tumeric, with a massive clove of garlic chopped on top. It is the first time I've had an egg in two months.

The toast still isn't sitting well, but I'm sure it'll even itself out. I'm going to wash it down with some broccoli tea and see what happens.

On a different note, thank you to everyone who donated to Matt's Movember quest. Thank you to those who've donated to the Islander's Bank account in Friday Harbor. Thank you for those of you who have already bought from the hopeforjess site on Etsy. Danny and I have been talking, constantly, about how fortunate we are. The money that you've donated has given us such a relief. We are still getting medical bills from 2010. Isn't that crazy?!?!? My goal is to continue to get healthier and healthier, treating my body with respect and kindness. I'm excited for this MRI because I believe my brain will look better than it did in October.

I believe I can beat this, and my confidence isn't based in hope alone, it's research backed. Dan and I were recently sent a thread from a cancer post, which included several research studies. Below is an excerpt which I found encouraging (to read the full post and access the research studies please click here):

Cancer is a Preventable Disease that Requires Major Lifestyle Changes
Abstract. This year, more than 1 million Americans and more than 10 million people worldwide are expected to be diagnosed with cancer, a disease commonly believed to be preventable. Only 5-10% of all cancer cases can be attributed to genetic defects, whereas the remaining 90-95% have their roots in the environment and lifestyle. The lifestyle factors include cigarette smoking, diet (fried foods, red meat), alcohol, sun exposure, environmental pollutants, infections, stress, obesity, and physical inactivity. The evidence indicates that of all cancer-related deaths, almost 25-30% are due to tobacco, as many as 30-35% are linked to diet, about 15-20% are due to infections, and the remaining percentage are due to other factors like radiation, stress, physical inactivity, environmental pollutants etc. Therefore, cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. In this review we present evidence that inflammation is the link between the agents/factors that cause cancer and the agents that prevent it. In addition, we provide evidence that cancer is a preventable disease that requires major lifestyle changes. A more detailed discussion of dietary agents that can block inflammation and thereby provide chemopreventative effects is presented in the following section. Most carcinogens that are ingested, such as nitrates, nitrosamines, pesticides, and dioxins, come from food or food additives or from cooking.

If 90-95% of cancers are rooted in environment and lifestyle, shouldn't we be able to reverse most them? I still believe that my cell phone was to blame for my brain tumor. I think it was the radiation. Lots of people think I'm misguided, but I don't care. They don't do the research, and most people don't know to check WHO is doing the research. Most of the studies stating that cell phones are safe have been funded either directly or indirectly by the major companies that profit from them. Anyway, enough of my rant. Back to the cancer.

My body isn't going to right itself, I need to build up the Natural Killer cells, they're the little warriors of your immune system that go out and clean up tumor cells and viruses. It's been proven in studies that people with cancer have a depleted amount of NK cells. So, just by eating "clean" food will not, alone, fix my problem. This cancer is a whole body disease, it can not be eradicated with food alone. I need to build up my immune system, and cultivate my NK cells. With supplements you can increase your NK cells, and often after a period of supplementation, your body starts to create more on its own. I just need to train my body, and give it a jump start of sorts. Anyway, I think I'm getting to technical in all of this - sorry. I tend to get really excited about this stuff.

I want so badly to fix this cancer and help others. I don't mind doing the leg work. It would be my ultimate dream to get to the point where there is no detectable cancer in my body and then help others achieve the same outcome. That would be the ultimate. I can not imagine how wonderful that would feel, to replicate the success. But, first things first, I have to start with me.

Stockholm Syndrome?

I've been thinking a lot lately about this brain tumor journey that I've been on. It's crazy. What a huge diagnosis. It has completely evolved who I am.

For the longest time I've looked at this brain tumor/cancer as a fight, that I'm at war with this little growing nugget in my brain. But the truth is that Herman (my tumor) has taught me invaluable lessons. I've learned more about kindness, about love, generosity, grace, perseverance, tenacity, curiosity, patience, true happiness, and so much more. Instead of fighting Herman, I'm confused because I'm so grateful. It's such a dichotomy. I have so much love in my heart that I've been able to go through this and learn so much, and at the same time I'm at odds with the fact that the same thing that I appreciate so much is supposed to be my demise. It's confusing.

I was okay, as a person, before the brain tumor, but now I can say that I'm truly proud of who I am. I hope it's okay to say that I'm proud of myself - that it's not cocky or weird. It's just that sometimes, in my past, I haven't always been the nicest person, or the most kind, generous, or patient. I'm embarrassed to say that I went through a decent phase of superficiality while I was in college.

Anyway, I'm curious. I'm curious about how this is all going to play out. I feel more at ease with this cancer than I have ever been. But, I wonder, if I am okay with this brain cancer, is that giving up? I don't feel like I'm giving up. I'm still exercising, focusing on my strict diet, laughing, and living my life, but at the same time, if I'm not "fighting", am I accepting? And, is accepting bad?

I can't quite put my finger on this one. Is this healthy or do I have Stockholm Syndrome? I don't even know how to answer this question.

Moan & Gripe With Me

Last night, while I was in the shower, I started thinking about how goofy I am. Instead of being excited about the jog halfway around the lake, and concurrent walk the rest of the way home, I was disappointed in myself. What the hell? How backward is that. Instantly, I started laughing to myself and changed my thinking. Exercise is exercise. I flashed back to the days I was in the ICU. I remembered the paralysis on my right side. I remember not being able to walk more than a few steps without being winded and exhausted. I remember months of slowly training to start jogging again, and eventually, my first 10k. I have everything to be grateful about. I might get tired, and yes, that's disappointing, but I'm still here. I'm still nourishing my body with nutrients, sleep, exercise, meditation, and cognitive challenges like reading. My mind and body may be tired from time to time, but they are also the most healthy they've ever been. Sometimes, more doesn't mean better. I don't have to run five miles to get the same results. I just need to do quality exercise, breathe deeply, use it to rejuvenate my mind, and be grateful for the opportunity to work my body. There was a time when nurses told me I might never jog again. I have happily proved them wrong. When I'm down or frustrated, I have to remind myself that, if there's a down side, there's always an up side. I already feel better. Still tired, but much happier! And that's what it's all about :)

Last night Danny got a kick out of my study session. I've been reading the book, Cancer: 50 Essential Things To Do, by Greg Anderson and taking notes. I'm researching the way to navigate through this diagnosis, and learn from survivors. I figure, those who have fought the cancer fight, have learned things about attitude, nutrition, spiritual well being, and much more. The only way to be successful is to learn from others and use a whole body and mind approach. Anyway, I didn't realize he was taking a picture - he thought I looked "pretty cute" all wrapped up in furry blankets. Danny calls me a pillow monster. I somehow manage a way to turn our bed into a mass of pillows, and fluffy blankets. I like my nooks to be cozy and safe.

Just before bed, after I turned out my lamp, I stretched out, closed my eyes, and pictured my body hovering above. I just wanted to picture my body and see what it looks like in my mind's eye. The moment the image appeared in my mind, I noticed there was a light blue, and medium turquoise blue color surrounding my body. It morphed and phased into white light, then pale blue, white, pale blue, finally resting on white as it surrounded my body. The colors oscillated around the peripheral of my body - with no particular section of interest. It was really interesting. It felt good. It felt positive.

I believe that I can make myself healthy, with help from western medicine, alternative treatments, nutrition, spiritual well being, stress regulation, exercise, attitude, and enough sleep. I'm realizing that there's a lot of dedication needed, but it's all for a great purpose, and it helps me excel in all areas of life. Sure, I would love to be sipping on a mammoth goblet of red wine, nibbling on truffle-infused sheep cheese, but seriously, who cares (and someday on a special occasion.....). We can't do everything we want, eat whatever we want, and have whatever we want. That's life. The most important thing to remember is that I have the opportunity to earn my health, and each time I earn something, each time I meet a goal, I'm fulfilled and proud of myself. I just have to give this more time so that I end up looking at this as a lifestyle and not a diet or temporary thing. There will be times when I can take it easy, but I need to earn it. This whole body approach is proven to improve overall health, and that's my goal. I have to stay focused and enjoy the positive effects of the changes in my life since my last MRI. My skin is clear, my weight is down to 140. I'm more calm, and my headaches are minimal. Of the 43 days since making these changes, I've only had 3 or 4 days of headaches. That's amazing.

This diet is not what most people choose to do with their lives. It's quite extreme. But, unfortunately, it's how we should all be eating. I wish it wasn't the case. I wish we could eat sourdough, homemade pizza, jelly, cookies, and all the yummy, white carb, white sugar foods that taste so delicious. The sad truth that no one wants to acknowledge (because it sucks) is that sugar (other than in whole foods) is very bad for you. White flour is very bad for you, white potatoes are bad for you, and table salt is bad for you. If there are ingredients in your foods, you should try not to eat them. Foods should be coming from the source. The problem is that people are busy, or tired, or it's expensive, or whatever. Usually, it takes someone getting sick to change their ways. Sometimes, even then, people don't change. I'm not saying that I can cure this brain cancer just with food choices. I wish that were true - and who knows, maybe I could, but the point is that we need to give our bodies a fighting chance. A platform to succeed. Even if you can't seem to give up all of the bad stuff, just try to cut back. You don't have to be as extreme as I am. Start small. Choose oatmeal over cereal. Choose a spinach salad over iceburg lettuce. Choose a quinoa salad over a potato. Choose brown rice over pasta. Choose steamed broccoli over honey carrots. Choose vegetable soup over clam chowder. Avoid the bread basket. You always have a choice. You DO have the will power if it's important to you. Make your health your priority. If I can do it (even though I moan and gripe), you can do it too. Moan and gripe with me!

Brains Behind The Operation

Well, I'm still sick, but at least I'm feeling kind of better. As long as I'm vertical I can manage - horizontal is when my hacking cough sets in. I asked Danny yesterday why it is that I can handle brain surgeries, but not a common cold. What a baby! I'm still convinced that my immune system was juggling the stress of that silly little mole surgery. I used to be so tough, conquering things head on. What gives?

The only thing I can figure, is that I don't do well with optional pain. I also, will never elect to have surgery. I'm just too terrified. This little knife show that the dermatologists want to do, is a preventative measure. I had a mole removed and they thought that all of the cells were excised, however, unfortunately, the pathology came back as a moderate atypical melanocytic nevus and they left somewhere around 1-2% behind. Now they want to go digging for more.

The problem is that I'm a weeny. Since the cells are only "pre-cancerous" cells, and not cancer, there's no way we will ever know if the cells will progress. Well...actually...there is, I guess, if I show up with melanoma down the road. Of course, the fact has not been lost on me that I currently have brain cancer, so obviously my body isn't doing a stellar of a job fighting the bad guys.

Another thought swirling around in my head, is that the artemisinin that I had been taking (I stopped when I woke up with a fever and since I'm still dealing with a pretty serious head cold, I've put all supplements on pause), also fights melanoma with a vengeance. So, I wonder, do I need the surgery? Is this necessary? I've lost night after night about going through with this surgery, but what if I make the wrong choice? I've been horrible with the ambiguous questions ever since surgery, maybe even since I was born. I can sit on the fence playing the devil's advocate all day, and the next day, and the day after that.

I know I need to make a decision soon, but it's incredibly difficult. That partnered with a letter in the mail from UW stating they have scheduled my radiation. Yikes! I talked to an assistant to the nurse of my radiation oncologist (say that five times), and told her that they didn't make a very good case for me to do the radiation. The only positive outcome (they say) is that the radiation will stunt the side effects of the brain cancer. "Stunt." What the hell is that? Seriously? "For how long?" I asked. The answer was that they can't be sure. So, I'm supposed to pay for a procedure that does not extend my life, does not kill the cancer cells, and should/could/might stunt the symptoms of the brain cancer? Eh. Ok. That seems absolutely asinine. That's seriously the plan? I'm supposed to have my head screwed to a board and get beamed with radiation for an hour a day for 5-6 weeks and lose all of my hair, possibly lose some or all of my vision, possibly lose my motor movement and cognitive abilities? I might lose the ability to speak or read down the road, and it could cause more malignant brain tumors in the time that I have left? All of that, just so that they can say that they might have "stunted" the symptoms.

And, here I am feeling like the bad guy, the idiot, that doesn't want to do it. The naughty patient that isn't buying into the "stunt it" approach. I feel great not doing the radiation right now, I would currently be starting week 3 or 4 of treatment, but at the same time I wonder if I'm crazy. All of their words don't add up to doing the radiation, but at the same time, radiation is the standard procedure. Radiation is the next step. It's what you do.

Am I crazy to believe, or hope, that I might be able to fight this fight without radiation? Am I stupid to think that I can win this battle, and survive? Am I doing enough? Is this, currently silent killer, proliferating and taking over my brain? I want to win, but I know that wanting isn't enough. Thinking positive isn't enough. If I only have a 1% chance of surviving this brain cancer, I need a better plan. I need the BEST plan. I have the fight in me, but that's not going to kill it on its' own, I need the brains behind the operation.

I try not to stress about this cancer, but it is absolutely impossible, especially just before bed. My latest reprieve is a trick from my good friend Janice. I start by closing my eyes, and then I pick a category. Next, I systematically go through the alphabet, and find an item for each letter. Here's an example from last night (I even had Danny help me for a few letters, but it didn't work. It started to be a fun game, and we ended up laughing too much so it defeated the purpose - good on stress but bad on sleep). I picked the category of, Adorable Animals. For the letter "A" Danny picked, armadillo (don't know how cute they are, but I gave him a pass). For the letter "B" I picked bumble bee (also kind of a fail since bees aren't animals they're insects). Anyway, I think you get the picture. In all of the times I've used this technique, I have only made it to "N" before falling asleep. I love waking up in the morning and trying to figure out the letter that put me to sleep. All in all I think this fun sleep trick is pretty astounding and hilarious, either I don't have much in my repertoire, or it's incredibly relaxing. Either way it sums up as success!

Okay, time for bed. Tonight I think I'll try Bodies Of Fresh Water (including all rivers, lakes, waterfalls...etc....). Something tells me I'll be lucky to make it past "G."

It's Official: Brain Cancer

There's an argument in the medical world about brain tumors. A stage 2 astrocytoma often isn't called, "brain cancer" - it's just referred to as a stage 2 brain tumor. It's not until stage 3, does the world refer to an astrocytoma as malignant. That has always baffled me. I've listened to my doctors over the past year and half, listening to the voice fluctuations, the terminology, waiting for changes, trying to make sense of their words. This past appointment on the 25th was eye opening. It was the first time my radiation oncologist spoke of my brain tumor as cancer. Before that, he only discussed the "tumor."

I have brain cancer. Yikes. That sounds a hell of a lot worse than a brain tumor. I was happier with the brain tumor label. But he's right, I don't exactly have a brain tumor anymore, they removed the tumor and now I just have cancer cells all over the back of my brain. Some in nuggets, others invisible to the scientific eye. Frightening stuff.

So here's what we learned at the appointment:

Average growth of my type of brain tumor is approximately 4mm a year. From April of this year to October (this appointment), my brain tumor grew by 4.5mm. That was a 4.5mm growth in six months. Bad deal.

My radiation oncologist wants to start radiation therapy right now. Here's the information he gave about the process:

It will be conformal radiation - they will radiate the whole tumor area. It will take 5-6 weeks. It's a treatment every day except Saturday and Sunday. To start, they will create a mesh mask that they will form to my face. They will then lay me onto a table and screw that mask to the table so that I can not move. If I move, even a tiny flinch, during treatment it will damage a whole new host of healthy brain cells, killing them. The first appointment will consist of 30-45 minutes of my face being screwed to a table while they measure things. Then the following appointments will be a one hour block. They will strap me down and screw my face in to the table, then there's the 10-15 minute radiation with the beams. It will be 3-4 high powered beams going through my entire head from all sides, converging at the back of my head where my tumor mass is located.

Side Effects:
     Short Term:
          Fatigue, Edema (accumulation of fluid in the brain), Seizures, Hair Loss (very likely permanent in the tumor area, but they'll know for sure after three weeks into the radiation), Nausea/Vomiting

     Long Term:
          Second Malignancy (a second or more tumor in another area of my brain), Damage to Normal Brain Tissue, Memory Loss, Face/Neck Skin Pigment Change, Sight Loss, Language Loss, Movement Loss, Neuro-Cognitive Loss....all of these long term effects are permanent damage that will not come back.

The kicker of this treatment is that it will not add any time to my life span. None. Basically, they will radiate the entire circumference of my old tumor, and add a buffer zone where they will kill healthy cells around the area to try and kill any invisible tumor cells in the outside area. The biggest concern in my mind is that my tumor was massive. Therefore, the buffer zone around my tumor area is quite large. That's a lot of damage to a lot of healthy cells.

The doctors say that the long term effects are permanent. They believe that radiation, right now, is the right choice because they believe that all of the short and long term effects will happen anyway as the tumor grows, so they believe that zapping it right now may slow some of the side effects. I guess they're expecting me to eventually have no vision, be paralyzed, have limited speech, limited cognitive abilities, and have to deal with a second or third, or however many more brain tumors in the rest of my head. This is crazy.

I keep thinking and thinking about this radiation and it just feels wrong. I just can't do it. I can't damage my brain, and my body like that. My radiation oncologist already doesn't like me because I refuse to get back on my anti-seizure medicine. I try to keep it light and tease him, but he is unimpressed by my chutzpa. I figure, it's MY BODY. It's MY BRAIN. It is NOT his brain. When I tell him I'm not going to do it right now, I know he will act like it's some grave mistake, but you know what - it's not his tumor. This is my life, and he can shove it. Sometimes I feel like he's drooling over my brain, and that's creepy. He has bought into the "standard of care" doing radiation, and I believe that there are other answers.

So, instead of jumping on the killing machine, I've started a new alternative therapy. Some of you might think I'm crazy, but that's ok. It is widely known that our FDA is hand in hand with pharmaceutical companies, and that they fund most research. That makes it incredibly hard to get valid alternative treatments recognized in the US. If there's no money in it, it's hard for hospitals and practitioners to jump on board. It's just our system.

I'm going to find my own way, right now using artemisinin (the main ingredient in anti-malarial drugs). If this doesn't work, I will try something else, maybe the Burzinski Clinic in Houston. I will not kill my body. I have been very fortunate to have a brain tumor fighter contact me to share their fight, and success of stopping, shrinking and then killing her brain tumor. Her husband has joined my fight to help me beat this. They've shared their MRI's, their techniques, their recipes, and their research. It's fantastic!


Here is what I'm doing:

• At breakfast or lunch I have 500mg of vitamin C, 400 units of vitamin E (with mixed tocopherols), and  a D3 vitamin
• I stop eating at 4:30pm
• Four to five hours after eating dinner, on an empty stomach, I take 2 capsules of Artemix and 4 capsules of Butyrex (I might end up adding a ferrous iron supplement too, but I need more information). 
• Between dinner and the pills, Danny and I take a quiet, relaxing walk, or visit, or watch a movie. Or I'll take a bath. I try to use that time to decompress. 

The premise of this treatment is that the artemix (consisting of artesunate, artemether, and artemisinin) binds to the highly iron filled cancer cells and kills them. 

Obviously, I'm not a doctor, and I'm not recommending that anyone do what I'm doing. If you're interested in the research let me know. I'll try and figure out how to add a page to my website and include all of the reasearch documents. I'm not going to include the MRI's, but the research alone should impress.

When I received the results of this past MRI I was in shock for two days. Then, I went into a deep depression. I would wake up and head downstairs to my favorite chair. I wouldn't get up until my bladder hurt so badly I thought it would explode. I couldn't get myself to the shower, I didn't want to eat, I didn't have the energy to talk to anyone or get on the internet. I was scared if I talked to friends I would just lose it and cry uncontrollably. So, I isolated myself. Things are looking up though. I'm happy to say that I'm on an upward swing. I was so scared, and it seemed so unreal, but the more resesarch I read about the artemisinin the more hopeful I become. It's an amazing cancer fighter for many, many types. Maybe, after all, I will cure this. Maybe I will be that 1%!