The Trick About Treatments

Hi Friends,

Good morning. Although I didn't sleep well, tossing and turning, trying not to vomit, I feel refreshed and excited to start the day. It's all because I have such wonderful friends who help me research my protocols, awesome neighbors who print up research for me and take me to my IV clinic, genius brain tumor fighters who help contact experts for more information, and my loving parents who find the best German clinics. I feel so connected, fighting amongst warriors who are battling by my side.

This morning, when I woke at 5:00 am, I was frustrated and exhausted. I'm only at 1,500 mg of the homemade sulforaphane pills and I'm barely keeping it down. The target dose is double that. I'm worried that I'm not getting enough to pack a wallop against Hermie. Dan keeps telling me that I'm doing the best that I can, and that I can only do so much. If I throw up it will ruin everything. I just don't know how I'm going to get the dose up. I always thought that I had a steel stomach, but now I realize that I'm nothing compared to my buddy who killed her astrocytoma. She is a crazy, amazing, insane warrior.

It makes me wonder, more and more, if I should seriously consider the dendritic cell therapy in Germany. It's expensive, and logistically tricky, but if I had endless funds I would absolutely hop on a plane and make it happen. The only reason that I haven't already started the treatment is because I'm trying to beat Hermie with more affordable tactics. The sulforaphane works, it has been proven by my friends, but dear God it is incredibly tough on your body. The plan has been for me to get up to the target dose of 3,000 mg per evening, and then sustain that for two months, then get an MRI to check results. If somehow Hermie continues to grow, we would adjust the protocol, and probably head on a plane and add dendritic cell therapy and hyperthermia to my treatment plan. Dendritic cell therapy is incredibly effective for brain cancer, and since I found the tumor specimen from my brain surgery, I know that they can target the vaccine to my specific cancer DNA.

The whole thing is tricky. I'm not sure how long I can go without sleep, and still keep healthy. Without sleep, constantly fighting painful intestines and discomfort, a person might go crazy. It's not much of a quality of life. Very tricky. But......not to forget.......it works. It comes down to one simple fact, "What are you willing to put up with to save your life?" Well, actually, it's not that simple, it's not just what would you do to save your life, it's also, "What are you willing to do to try and save money?" You don't want to go into debt $100,000 if you don't have to. If we were loaded, and $100,000 was just a drop in the bucket, I wouldn't worry about it. But since we don't have that kind of money, we have to be smart about the treatments that we choose. It's sad that tons of people die of cancer every single day because they can't afford the best treatments. It's sad, but it's just a ruthless fact.

When you have cancer you're playing a tightrope of deciding when to do the right treatments, can you push out the expensive options? If you push it too long you might die. You're constantly evaluating the risks (death), and benefits (saving money).

And, for the record, this past weekend I did get to do something fun! A group of girlfriends headed to Lake Chelan for a girl trip. It was very low key. The weather was cool, which was perfect for the hot tub. It was nice to get out of town. After vomiting (and such) on Thursday night, I took two nights off from the sulforaphane pills. It was glorious. It's fun to be one of the girls, goofing around, talking girl talk. I enjoyed pretending that things aren't so difficult. I loved not having to plan my days around pills & breakfast, pills & research, run around the lake, pills & lunch, pills, research & pills, pills, pills, pills, nausea & pain & fitful sleep. It's important to have some time to just be. Just exist.

Synergising Treatments

How awesome is my friend Sara? She's THAT awesome! Remember my self promoting t-shirt from my very first race? How embarrassing. You guys are so nice to put up with me! Thank you for cheering me back to normal; for sending me ass-kicking energy. Thank you!! I have such a killer team...no pun intended. I can not wait for the big wake for Hermie, a massive party when we can dance and get goofy. There WILL be a day when the cancer is gone. He just doesn't know who he is messing with, not just me, but my rallying troops. We are a force!

In a few minutes I'm headed for my 1.5 mile run to the bus stop, then a 40 minute bus ride to get my high dose vitamin C IV. I have a new system, it's important to hone my schedule of pills, making each dose work with the other supplements or IVs so that they're working synergistically, multiplying the effectiveness. On IV days, I take 10 bioavailable curcumin & 6 piperine, then thirty minutes later, I take 18 homemade sulforaphane pills. One hour after that I am hooked up to my IV. I'm out of my high dose sprout smoothie (gotta wait until my parents grow some more), but when I have more of that, I'll add that in to the mix. The isothiocyanates work with the IV's, especially the curcumin and resveratrol. This whole protocol is intricate and takes serious scheduling - but it's incredibly exciting! 

I have to focus on increasing the efficacy of the IVs, that's why I'm working my supplements around the IV days. At this point, the IVs are $735 per week, and the chemo drink - which we're rolling into pills - cost $40 per drink. So, just with these two treatments, we're pushing $1015 per week. Fighting cancer the natural way is incredibly expensive, but it's effective. Every treatment that we're exhausting has been proven through scientific experiments. They all fight brain cancer or I wouldn't be doing it. The creme de la creme, though, in alternative treatments for brain cancer is dendritic cell therapy which costs, when completed (all three rounds), around $45,000 and lasts for about 14 months. We're meeting with my doctor on Wednesday after my last IV for the day, to get more information. They take some tissue from my tumor specimen (I called around to various departments at the UW last week and found my tumor,  a complete miracle since my surgery was over two years ago), and they create a personal vaccine. Pretty impressive stuff which has about a 50% success rate, and can be combined with all of my current treatments and supplements. 

The expense of all these supplements, IVs, and treatments are obviously mind-boggling, but if we're smart, we will only include the most effective choices and they should work together to get me healthy. I keep hearing from friends, and family, that money should not be a reason to avoid a treatment. Get the treatment and then money will come later. Danny and I figure that we will be paying off my medical bills, happily, well into our golden years. The expense of treatments used to completely freak me out, but lately I don't care as much. I need to get healthy, and once Hermie has left the building, I will write my monthly checks for payment with a big glossy smile. The money thing IS scary, let's face it. Money is important in order to afford life's necessities, and then above that, it's important in order to have luxuries like children. But, Danny and I realize that as long as we're healthy and alive, we will be happy under any circumstance, as long as we're together. 

Chemo Concoction

Danny and I took off for the Memorial Day weekend. We packed up Emma and Bingie; Emma in her crate in the back of the truck, and Bingie wandering the cab, finally settling onto my lap. We braved the crazy traffic, and headed east over the mountains. My parents gave us their house so that we could get out of town, knowing that we need a kitchen in order to function with our crazy chemo phase. It was so much fun getting away from the routine of our life. We needed a break, a change of pace, a different view, new scenery, and a mild adventure. 

Above are photos of the chemo process. On Saturday night, Danny and I made two batches. These new little gadgets are making things so easy! After the drink had cooked for three hours at 100 degrees, I hunkered down. It took me an hour to ingest an entire glass, five large sips every 20 minutes, which is pretty typical. I can't drink it fast or it causes almost instant projectile vomiting. After my last sip, I was able to hold the drink down for one hour, then, after gently pacing, and doing some deep breathing, I had a wave of nausea so severe that there was nothing I could do. Neither my desire nor thinking of warm beaches, butterflies and bunnies did it either, I went to say something and vomit shot out of my mouth. It was seriously like something you'd see in a horror movie. The worst part about vomiting, other than the fact that I need my body to absorb the sulforaphane, is that one drink costs about $40. So, it's practically liquid gold. I don't care about the cost, as long as it gets into my body. I'd pay anything to heal myself, but if the money is going down the drain, quite literally, it's frustrating.

Danny cleaned up all of the mess, which was incredibly sweet. I wish that there was something I could do - I feel like I'm literally allergic to this stuff. The worst part is that this chemo drink that we created on Saturday night was half the dose of the normal drink. I honestly don't think I can drink it, not even a little bit. It always causes me to be sick.

Fortunately, there's a way to slow cook the drink, and as it dries up, you can roll the film into pills. Since we recognized my issue with the chemo drink in the past, as a precaution, we had already enlisted my parent's help in creating chemo pills. So, thankfully, when we saw my parents, after the long weekend, they handed me a bag of their homemade pills. Not wanting to waste any time, last night, I started with five pills which is 245.5 mg. I'm starting slow, trying to find my tolerance. Five pills caused heartburn, and some discomfort, but that's fine - no big deal. I can handle pain, and discomfort. In fact, I can handle all of the horrible side effects, but somehow I can't manage to keep it down for good. There has to be a point, though, the threshold where I can get the maximum effect and not vomit. The way that my body rids itself of the chemo drink is shocking. It's like I'm possessed - it's unreal. I just need to keep this stuff in my system long enough to get the effects. And happily, at least now, I have a few pills to slowly assess things. The pills are lot of work, but with my parents and Danny and I, all working like two sweatshop factories, we should be able to keep a good amount in production. I have to do whatever I can to heal my body. This treatment works, we already know that, but, first things first, I have to find a way to keep it in my system.

Hard Work & Healthy Distractions

Danny is going to kill me. I was supposed to tell my friends at the retirement home that I need to take a couple of weeks off from volunteering. Dan's worried that I'm overdoing it, and he wants me to focus on getting healthy. He believes that I need to focus solely on my new protocol, but while I was painting Margaret, Elizabeth, and Ruth's nails, I realized I just can't walk away. These wonderful women are so fun to be around. They keep me laughing, or at other times, we're just quiet. Volunteering feels like the only time that I'm not focusing on just me. It's wonderful helping someone with their walker, or opening a door. I love serving them juice, or painting their nails. They give me a reason to get out of the house every Tuesday morning, whether it's sunny or pouring rain. I'm afraid, that if I can't volunteer, I'll get depressed. I'm pretty terrified these days, and I need distractions. I need to help others. I need my life to not be just about me.

Yesterday was my first high dose vitamin C treatment. On Thursday, I'll return for IV curcumin and resveratrol. I'm going to be alternating those two IVs twice a week for quite some time. Unfortunately, the treatments are not covered by insurance. So, thank you to everyone who has donated money to help heal me! Thank you to Matt & AJ for Movember For Jess, and to those who have donated to the Islanders Bank account in Friday Harbor. Of course, thank you for the girls who created, and maintained the Hope for Jess website of my art work. Thank you to everyone who donated to any of the above fundraisers. You guys are AWESOME!! When it comes to medical care, hospitals are wonderful about payment plans, if need be, but when it comes to "alternative" medicine, you have to pay upfront. So, the money that has been donated to me in the past, has been incredibly helpful. I've used some to pay current medical bills, but then I got smart, and realized I needed to bank the donations for any kind of uncovered care. Because of your amazing donations, I'm getting full body, synergistic care that is not only healing my body, but also, directly targeting my cancer cells with a barrage of weapons. So, truly, thank you from the bottom of my heart!

Apparently, the high dose vitamin C, curcumin, and resveratrol IVs are synergistic with my low doses of artemisinin. They should all work together, along with my diet and supplements which have grown exponentially (shark liver oil, borage seed oil, fish oil, maitake, shiitake, lions mane, aloe vera jelly, boswellia, CoQ10, EGCG, D3 - I'm probably forgetting a couple) - and last but not least, it should all work with the sulforaphane chemo drink. I haven't been able to get started on the chemo drink, yet, unfortunately. I've ordered a yogurt maker, which should cook my chemo drink at exactly 100-110 degrees for several hours. It even has little cups, that sit on a tray. I'm pretty excited about it - the little cups on the tray will make it so that I can do a week's worth of drinks in one batch. Woop woop!! The shipment should arrive by the end of the week. Once that arrives, Hermie is going to FREAK. I'm pumped!!

Well.....I, mean, I'm pumped, and completely terrified. It's tough to keep my chin up and plow through everything, but I know that giving up would be ridiculous. I need to stay calm, ignore statistics about my cancer and effectiveness of the various treatments (30% success rate for one, 20% for another, etc.). I have to believe that these things that I'm doing are going to work together and heal my body. To put this much effort into living is risky because I would hate to be disappointed, but, of course, that's a horrible attitude to have. It's just not acceptable. That's not a winner's attitude. Maybe I need to do more deep breathing or something. Part of it could be that I feel disjointed from Hermie lately, I can't quite tell what's happening up there. I worry that he's morphing, which does tend to happen. Cancer cells don't like to die, and when they come into contact with things that threaten their livelihood, they like to adjust, change their dynamics and progress, so that the treatments are rendered ineffective. To outsmart the Hermies of this world, we have to keep the full frontal attack. It's exhausting, but it's the only way to win.

Big D Turns 34

Dan tuned 34 on Saturday, and above are the remnants from the celebration. It's fun having sweets around the house, they're so pretty! Baked goods are so feminine. They make me infinitely happy. I thought I'd be all over them like a little bunny on carrots, and that I'd have to throw them away, but oddly, after sharing two cupcakes on Saturday, I had my fill. Now, I'm sending Dan to work each day with goodies for the other boys. I used to bake all the time, but stopped when I got the big C. Ever since I learned that sugar literally kills, I've cut back in a big way. It's awesome having the cupcakes and brownies around the house because it makes me feel warm, that our home is cozy and inviting. There's something about baking that just feels right, even when I've read that it's so wrong.

Things are good over here. Like I've mentioned before, we've been more relaxed about my diet which has been a lot less stressful. I'm very curious to find out at the next MRI if the high doses of artemether & sulforaphane cancel out my relaxed diet and still shrink old Hermie. It's all such an ebb and flow, there's never definitive answers until each MRI. We're walking in uncharted territory for the most part. I'm of the mindset that if Hermie grows, it will be because of my lax restrictions of sugar (sweets, wine, carbs, or things of that nature).

We were incredibly hard core from October until January. It was precise, and calculated. I can only function like that for a short while. I have to be bad, and live like a normal human from time to time. Anyway, we'll find out if I've been enjoying myself too much in about six weeks. It used to unnerve me, drive me nuts, always worrying about my choices, but luckily, with this type of brain cancer I have a lot of leeway compared to the further stages. According to the World Health Organization, "Individuals with grade 4 astrocytoma have a median survival time of 17 weeks without treatment." Jeez. Seventeen weeks is just past four months. Death? Yikes. If I was in that situation I wouldn't even play around with cheating on my diet, but since I'm not, I'm living my life allowing some happy foods, not just eating for health, but also happiness. It has taken me a bit to relax, and I might find on April 19th that it was a mistake, but hey, if I don't try it I'll never know.

I feel confident that I can cure my brain cancer, even though it isn't often accomplished. I probably sound crazy to some, maybe even to most, but just because others have heart breakingly failed, at no fault of their own I might add, doesn't mean that I will. And when I do beat this, I will find a way to dedicate my life to help others survive.

Partners In Crime

This morning started with our pills. Mine included 12,000 mg of bioavailable curcumin and 6 bioperine (black pepper for absorption), Jess's included 1,500 mg of biovailable curcumin and 1 bioperine. Jess is doing the baby version of mine so that she can understand what I've been going through. She's great! And obviously crazy :) 

Next, twenty minutes after the pills we took our first big gulps...

Just A Chapter

Two days ago I couldn't stay awake for more than 4 hours at a time. If you think about it, it's kind of hilarious. I'm like a child sometimes. Yesterday I did high doses of curcumin, piperine and then followed it up with a sulforaphane drink. There's a picture below of the concoction in process. I wasn't able to finish it all, but I didn't throw up so that's progress! I took a big gulp again this morning, and almost lost it. I've saved the final gulp to finish later today or tomorrow morning. My stomach is in complete knots. The only thing I can handle right now is hot tea. I'm okay with that though. The whole point is to keep the drink down, so who cares if it makes me sick, as long as I don't barf. 

A few minutes ago, through the pouring rain, I jogged the lake. I needed a challenge. I've been so damn tired, and for a second, I started to feel a little better. Seizing the moment, I tossed on some running shoes and a hat, snagged Emma's leash, and took off around Green Lake. Oddly, my stomach loosened up as I ran. The rain was refreshing, and reminded me of how fortunate I am to be able to run again. I thought about the long journey after the brain surgeries. This brain tumor is just going to be a chapter in my life, not the whole story. 

Meal Planning

Success. There's a billion birds at my feeder!!! Whoo hoo!! They are so cute, and so little. It's fantastic! Bingie was drooling and talking up a storm, we were both very excited.

Thanks for the encouraging words on the last post. I appreciate the support. Dan and I realize that this is very difficult. We're trying to navigate this journey with tenacity, but sometimes it's important to allow mistakes. The whole thing is tough though. I'm not really in a position to eat a normal diet. If I want to live, I need to eat better than anyone else. I need to fuel my body with cancer fighting foods and supplements, along with avoiding cancer feeding foods. It's impossible to be good all of the time, and it's hard not to hate yourself for your mistakes. The mistakes taste so good, too. That makes it even harder.

Dan and I are trying a new technique this week. We'll see how it goes. It's a combination of suggestions from friends. We're doing meal plans Monday-Wednesday. Thursday will be a bit more difficult because of the sulforaphane drink (which I'm thinking about doing on Fridays as well). On sulforaphane days I tend to not be that hungry. Saturdays are normal days when we can eat a more relaxed diet. Sundays are back to high antioxidant foods. So, it will look something like this:

Monday/Tuesday/Wednesday (limited antioxidants): 

Breakfast
Oatmeal or toast with almond butter

Lunch
Tuna (with or without bread) or almond butter sandwich

Dinner
Salmon or other fish or shellfish
broccoli or asparagus or brussels sprouts
quinoa or brown rice

Thursday/Friday: Whatever fruits or vegetables I want....YUM!!! Salads, slaws, whole grains, nuts, seeds, seafood...curcumin, raw garlic, onions, cayanne pepper, broccoli tea, green tea, oh the pleasures of the simple things. On Monday-Wednesday I find myself craving tea and blueberries. It's so funny that blueberries, apples and green tea fill my thoughts constantly when I can't have them.

Saturday: Same as Thursday/Friday but I can add diary, or wine, or whatever else to my meals

Saturday: Same as Thursday/Friday

I'm going to try this schedule out and see if it helps me mentally prepare for each phase. I might get more in depth with my planning, we'll see. I've never been that good with meal planning.

Chemo Drink Update

Bwoooohahahahaha....we did it!!!!! I drank the concoction, a gulp every 30 minutes. I created my drink with upland cress, daikon radish, and sulforaphane precursor pills. Because I used actual plant instead of sprouts, the drink was double the size. It was okay though, I did it! When my stomach hurt, I took big spoonfuls of organic hormone free yogurt (full fat). It soothed my stomach along with other little tricks. Having finished the last of the drink, by 2:00 pm, I could barely keep my head up, so I went to bed. Now, all rested after a several hour nap, I feel like a million dollars!! Thank you for supporting me. This is tough, but once it's over I feel wonderful. It's nice to have that behind me until next week. Now it's time to take a deep breath and pamper myself. I think I'll go downstairs and paint my toenails, they're looking a bit ratty. PS I didn't feel the Hermie burn like I have in the past, but I think that's because I fell asleep.

Sabotage

It's ironic that I pride myself on encouraging others to take care of themselves, and yet here I am a hypocrite avoiding my own life saving tricks. Sometimes I shoot myself in the foot. As I said in an earlier post, I took this week off of the high doses of artemether because I wasn't feeling very well. I wanted to give my liver a break. I had every intention of taking my high dose sulforaphane drink yesterday (the natural chemo), but as the day wore on, I kept avoiding it, deciding that I would take it just before bedtime and try to sleep off the nausea. Of course, just as it always happens, when I procrastinate, I end up falling through. And as the evening disappeared, my stomach increasingly clinched, fearful of the nausea and ill effects. In my infinite wisdom, I poured myself a glass of wine (yah, genius, because THAT'S good for my liver). Then another. Foolish girl. It was pure sabotage.

So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I'm drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass?

Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby's diarrhea - the kind of baby that's eating whole foods (mothers know what I'm talking about). Megs thinks it smells like burnt hair. Either way, it's horrible. I find myself about to barf, even though I haven't even drank any yet. UGH. I'm so frustrated.

As you can see, I'm not being as rigid with my diet these days. I'm acting as a guinea pig, waiting to see if this MRI will show a regression of the tumor even on a more Western style diet. I just don't have the strength or will to eat as good as I did last time. I'm scared that I'm feeding Hermie, but at the same time, I can't seem to stop myself and be a good girl.

I eat well most of the time, but I know from experience that eating well most of the time is not enough. Hermie grew a bunch from July of 2011 to October 2011. It was shocking - that's when they initially asked me to start doing radiation. Sometimes, because I feel so well, and I look healthy, I forget how serious this cancer is. If I would have accepted the standard care of radiation, I would still be dealing with necrosis. My healthy brain cells would still be dying - it takes around 6 months for the death of cells to taper off. I would be bald. I would be trying to recover from frying my brain. I look healthy because I have opted out of Western medicine's procedure. I have to try and remind myself that my cancer is very serious. It's easy to forget sometimes. I want to pretend that I'm normal, that Dan and I can laugh and talk about having children someday. Sometimes I don't want to deal with reality. It seems like this is one of those times. I need to get back up on my feet and back with the program. I'm hurting myself, and those around me whom I love. This sucks.

Roasted Portabella Mushroom, Red Quinoa & Upland Cress Salad

Upland Cress Salad

1 bushel flat leaf parsley (chopped fine)

1 English cucumber (chopped)

1 red bell pepper (chopped fine)

1 bushel upland cress (chopped)

3 green onions (chopped fine)

1 large lemon (juiced)

cracked pepper to taste

I need to be eating a bushel of upland cress every day (when I'm not on the artemether). At least a bushel. And the thing is, I know it. I know what I need to do. Why am I sabotaging myself with wine and other things? I'm embarrassed and disappointed in myself. 

These guys are fishing at Green Lake almost every single day. Aren't they cute?
They remind me of my brother. He'd be fishing every single day if his wife would let him :) 

Miracle Melatonin

Hello friends! Yesterday I was so exhausted that after my volunteer time at the retirement home, I walked back to the house, stepped into pajamas, and fell into bed. I slept for three hours. I've recently started taking 21 milligrams of melatonin at bedtime. Not only does it help your sleep rhythms, it boosts your immune system (among other things, increasing the number of your natural killer cells) and has been shown in clinical trials to extend the survival time for a multitude of cancers (including gliomas). I'm only going to take melatonin on the days that I'm not doing high doses of artemether or sulforaphane, just to be safe, but I feel like it's a great addition to my cancer fighting cocktail (for the record, I took Monday, Tuesday, and today off of high doses, I hadn't been feeling very well so I figured I'd give my body a break). 

Melatonin cleans your body of free radicals which are necessary for my artemether, so I'm pretty sure that it's a bad idea to take it during high dose times. Other pharmaceutical chemotherapies have been shown to work synergistically with melatonin. It's actually pretty amazing. It's too bad that doctors are scared to include melatonin during chemotherapy, it would increase efficacy and extend survival time. There's several research studies proving it. If you're interested, check it out. There are a few studies in the United States, but most have been conducted in Italy. 

Anyway, since I've started taking melatonin, I'm sleeping better, but I've also been pretty exhausted. I take it as a good sign though. I hadn't been getting enough sleep, and the melatonin is forcing me to sleep more. 

On the walk to the retirement home, I saw this amazing creation. I don't even know what to call it. Someone tied a bunch of red carnations into a type of mobile. It's beautiful, and such a fun surprise. What a cool act of kindness! Someone was really in the Valentine's Day spirit. 

The first daffodils I've seen around the lake!

Fill It With Happiness

What a difference a day can make! Ever since I lost my cookies (I wish it was cookies, but more like curcumin, sulforaphane, piperine and such), I've been feeling better and better. My brother and his daughter Isla came by this morning, and we had the chance to have lunch with our buddy Burke.

Life is so complicated, and then in the very next moment, so beautiful and simple. Kaal, Isla and I walked down to Green Lake and tried to feed the ducks, seagulls, and any other feathery friend we could find, but alas it was raining and we ended up tossing peanuts into the air for no good reason other than our own laughter. Actually, that's a pretty damn good reason :) It was fun!

I'm so lucky. My only goal in life is to survive, and on that trail that I'm trying to blaze, I just want to be able to show my love to those around me. Hugs, kisses, laughter, and love - it's the whole point of living. My life would be so different if I wasn't battling cancer. This journey continuously reminds me of the true meaning of life. I don't want to take anything for granted. It's nice to just live in the moment. Life passes by so quickly, and there's joy in every moment. If you can't see it around you, just take a deep breath, close your eyes and think of something that makes you smile. Life is just that simple. You can make it anything you want, fill it with happiness.

Drink Effects: Video

My friend Meghan just saved me. I forgot to get Gatorade or any type of chaser for my drink. Thank God for Meghan. She is amazing. She ran to the store, then came to me. I'm about to vomit, which is very detrimental to this treatment, so this will be short and sweet...here's a little video I made after a suggestion from my Mahar (Meghan).

Baptized by Nature

Where has the day gone?! Oh well.

I am so happy! I just had enough energy to run around the lake and swing by PCC to get essentials to finish today's treatment. Good lord that felt amazing. It's misting outside, and as I ran, the rain on my face felt like I was being baptized by nature. It was beautiful. For a moment, it cleansed me of my fears, and absolved me. It was glorious.

Now it's time to do what I've been putting off.....the curcumin & piperine, followed by the sulforphane drink. Here's the first step....yummy....

Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.

"Minimal" & "Stable"

Oh sweet baby kitten, I have great news. We recently received an email from my radiation oncologist, and things are lookin' pretty damn awesome! Let me start from the beginning though...

Friday morning, I had an unusual calmness for an MRI day. I just felt different. I wasn't sure if it was just insane mind control, or a sign of good things to come. Before the MRI started, I asked for an upbeat radio station - they pump music into your headphones to make the experience nicer. I usually choose something slow and relaxing to calm my nerves, but last time I got stuck with a barrage of heart wrenching ballads. It's no good when you're tearing up in the machine. Anyway, this time the young tech picked 106.1 which, according to their website, is a combination of "Top 40 and hits of the 80's and 90's." I literally was busting a mental move, wanting to shake my tail feather. It was AWESOME. They kept playing all the songs I already have on my MP3 player, so I kept flashing back to runs around the lake, visualizing my favorite Green Lake memories. The final song, as they wheeled me out of the machine, and removed my headphones, reminded me of my adopted (not literally, figuratively) little sis, Kristen Linde. It was Brittany Spears, causing me to grin from ear to ear. Priceless.

The MRI took a bit longer than expected, so as soon as I was dressed and found Danny and my parents in the waiting room, we rushed downstairs to the radiation oncology department to meet with my radiation oncologist's nurse.

As they checked me in, they took my vitals and my weight, 144. Then we waited in our room for our RN to give us the results from the MRI. As we waited, we visited and laughed. I was pretty stoked to be weighing in at 144 considering the fact that three months prior I weighed in at 159. Quite the weight change. When our RN came into the room, the first thing she said was, "Wow. You look incredible!" That is music to any one's ears, but especially a cancer patient. It shows that you're doing something right. Anyway, RN said a couple of pleasantries, then asked if we'd like to see the scan. Of course, in unison, we happily replied, "YEAH!" She looked right at me and said, "Well. I'm not going to lie to you, IT'S NOT GOOD! Follow me." My heart sunk to my feet, but I stood and followed. We walked around the corner to the computer screen and watched RN flip through the scans as we asked questions.

RN pulled up the October scan, and the April scan to compare the exact same slides. That way we could see the changes. In comparing the October and January scans, it did look like Herman had grown. It seemed obvious, but later, we realized that the magnification was different! That's a massive error in comparison. As RN continued to say how bad the MRI scan was, and continued to measure Herman with the diagnostic tools, our hearts sank and we felt baffled. It was later, when received an email from my oncologist (forwarded from RN) that we realized that RN doesn't know how to read MRIs very well. PHEW!! We were so scared, so disappointed, and all for nothing! Here is a direct quote from my radiation oncologist:

"There is a nodular region of T2/FLAIR signal
 hyperintensity without enhancement along the anterior lateral margin
 of the resection cavity measuring approximately 10 mm x 16 mm x 11 mm
 on images 602/130 and 603/105 which is similar to minimally increased
 in size compared to October 2011 study where it measured
 approximately 9 mm x 16 mm x 11 mm. Otherwise the T2/FLAIR signal
 hyperintensity surrounding the resection cavity is stable. There are
 patchy foci of nonenhancing T2 hyperintensity within the lower
 medulla which are similar compared to October 12, 2010 and April 15,
 2011 brain MRI which could represent posttreatment changes or less
 likely artifact; these findings are not consistently identified on
 prior MRIs.  No abnormal enhancement. No new mass lesions."

Now, here is where things get REALLY crazy. I pulled up the radiation report from October 25th (the last MRI). In the findings it states, "There has been interval progression of nodular area of T2/FLAIR signal abnormality at the anterior margin of the resection cavity compared to multiple prior examinations dating back to 10/12/2010 that is suspicious for tumor recurrence, measuring 11 mm x 10 mm x 16 mm..." Now, if they're measuring the volume of the tumor, the order of the numbers shouldn't matter, right? And if that is the case, then the numbers match up with Friday's measurements which would mean that the tumor did not grow at all. Anyone have any thoughts on that? I'm confused, but excited and hopeful. The other thing that we noticed, was that Herman is not as bright as he used to be, showing a lack of tumor cell density. Which makes sense because I feel great! 

This coming Wednesday I will meet with my radiation oncologist, a new neuro-oncologist, and a specialist that deals with seizure medications. They're still trying to get me to get back on seizure medicine even though I've been seizure free for almost 5.5 months. Sometimes I wonder where common sense, and logic are found in the heads of doctors. No doubt in my mind, they are insanely intelligent, and I need them in my life, but they just can't seem to get out of their train of thought. Just because I've had two seizures, does not mean that I need to be medicated. I am self medicating with nutrition, exercise, sleep, and meditation, and it is obviously working. Why can't they see that? Ugh. 

Anyway, I'm so excited to share this news, I hope you find it as hopeful as I did! We are on the right track with this artemisinin and artemether. I'm still going to do the high doses of sulforaphane on my off days with the artemether, just to do a double punch. I'm so excited for the next MRI. What a change!! 

Things I've learned from this most recent MRI:

1. Don't just listen to the first person that reads your scan. They may not have enough experience or education to truly diagnose or determine. 

2. Keep your chin up, and enjoy each day, even the stressful ones. Life is about how you handle things. 

3. If you feel stressed, take a slow deep breath and close your eyes. Picture something that makes you smile. It  viscerally changes your mood. 

4. If my tumor was genetically based, no amount of dietary change or supplement would effect its growth (PS Astrocytoma tumor cells grow/replicate exponentially). According to this most recent scan, there has been minimal to zero growth. There may even be a change/lessening of density. Therefore, my tumor is environmentally based and can be treated, perhaps eradicated, with diet and supplement changes. 

I am so excited about this turn of events! This means that maybe, possibly even someday soon, I can help others eradicate their brain tumors. This is the most non-invasive and promising treatment I've ever heard of. It's cheap, and has little to no side effects. I'M SO EXCITED!!!

Here are two photos from this morning. We awoke to snow in Seattle - a rare occasion. Life is so beautiful!

I see a heart in the tree, and it makes me smile.
Put birds on a heart tree, and that's just pure bliss!

Emma dog & Jess 

Watercress & Wunder Runners

Recently, a fellow brain tumor fighter sent me all kinds of information on Artemisinin, sulforaphane and sweet wormwood. The research is incredibly promising, and it looks like I will be starting an alternative treatment based on the research. The best part, according to the research though, is that I had already been including a lot of the main foods that cause the death of the brain tumor cells. A lot of the research is relating to sulforaphane in the brassica family, and sweet wormwood. Although I have not been taking any supplements, I have been eating a diet highly enriched with the brassica family. In fact, I just ate my breakfast of an Omega 3 organic free range egg (it gets the extra omegas from flax in the diet), sprinkled with turmeric (a healthy teaspoon), placed on a slice of sprouted bread which was stacked high with watercress leaves (brassica family) and sprinkled with a clove of diced raw garlic. Needless to say my breath is ripe, but my macha green tea is helping calm it down.

My Little Watercresss Plant

I bought a living watercress at my PCC the other day. I've been picking off the leaves of the poor plant every time I walk past it. It's delicious! It's spicy, and helps disguise the garlic, which is a plus.

I don't always eat so wonderfully, for the record. I have to be honest. Last weekend was our third annual Oktoberfest Marathon Relay, and it happened to fall on a double birthday weekend. The birthday girls were Meghan, and Jenny. So, of course, I brought two dozen organic cupcakes (gotta love that it's all organic ingredients, it makes it sound healthier, but the truth is that they were loaded with scrumptious mind altering SUGAR. Yum!). I didn't make them, which is probably good because I would have eaten my weight in icing. As it was, I ate all kinds of delicious crap. It was fun! And then on Sunday night Danny and I realized, that once you get the taste of blood it's really hard to stop. The cravings are tricky, and it's so easy to go get crapy food. Crapy food melts in your mouth then hits your stomach like a rock. Healthy food has crunch and within moments you have more energy and you feel better about yourself. Even knowing that, it can be really hard to forgo the instant gratification that my tongue is pleading for.

Here's a photo of our group. I'm so proud of everyone. This marathon relay was my dream, it's my little baby. I always wanted to get a group to celebrate running and friendship. It's just a very, very happy thing for me. I've got a great group, and I can't wait for next year!! I guess you could say that my only long term goal right now is to be healthy for next year's race! Is that weird? Maybe I should have a different goal. I guess it's the only long term goal that I have because I'm always afraid to plan too far out. It's also the only thing on my calendar that's a year away. I can train for it too, which keeps it easy to use as a long term goal. It's concrete, and I like that. Anyway, here's the fabulous crew......

Operation Grab-A-Stein III

Broccoli Sprouts

I am officially growing my own organic broccoli sprouts. How fun is this!?! Allegedly, the process is very easy and we should have edible sprouts in 3-5 days. Year-round sprouts. This is fantastic!

I'm grateful to have Danny home. It's true what they say, with the right mate people DO live longer. We're eating ridiculous amounts of garlic, onions, and broccoli. We are two stinky partners in crime.

Here is a link to an article about sulforaphane explaining how it causes apoptosis (programmed cell death) in glioblastoma tumors (the most malignant and prevalent brain tumor around). I don't know the exact amount that naturalists use in treatment, or in experimentation for that matter, but I figure the more sulforaphane I can include in my diet, the less radiation or further treatment I'll need later.

If you're interested, you can google sulforaphane, and read how it kills lots of different cancer cells, not just brain tumor cells - it's very effective at fighting breast cancer cells too! Eat your broccoli. Seriously. Or, if you can't stomach enough broccoli, grow some sprouts like me! They're delicious on everything, salads, sandwiches, wraps, even pizza. According to Danny you can put sprouts on anything that takes toppings, "bagels, tuna....everything, pretty much."

I just remembered an article from months past that I posted, and I'm going to do so again, below. It's the specific information from John Hopkins scientists stating, "broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads." You can read the article here on my blog, or click the title for the actual website.

Cancer Protection Compound Abundant in Broccoli Sprouts 

September 15, 1997
Media Contact: Marc Kusinitz
Phone: (410) 955-8665
E-mail: mkusinit@welchlink.welch.jhu.edu
 

Photo: Keith Weller Dr. Paul Talalay displays broccoli sprouts. 2100x1585, 300dpi TIFF JPEG, (2.7 MB) "The young sprouts that we have found . . ."

JOHNS HOPKINS SCIENTISTS have found a new and highly concentrated source of sulforaphane, a compound they identified in 1992 that helps mobilize the body's natural cancer-fighting resources and reduces risk of developing cancer.

"Three-day-old broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads, and may offer a simple, dietary means of chemically reducing cancer risk," says Paul Talalay, M.D., J.J. Abel Distinguished Service Professor of Pharmacology. 

Talalay's research team fed extracts of the sprouts to groups of 20 female rats for five days, and exposed them and a control group that had not received the extracts to a carcinogen, dimethylbenzanthracene. The rats that received the extracts developed fewer tumors, and those that did get tumors had smaller growths that took longer to develop.

In a paper published in tomorrow's issue of the Proceedings of the National Academy of Sciences, Talalay and his coworkers describe their successful efforts to build on their 1992 discovery of sulforaphane's chemoprotective properties. Work described in the study is the subject of issued and pending patents.

A systematic search for dietary sources of compounds that increase resistance to cancer-causing agents led the Hopkins group to focus on naturally occurring compounds in edible plants that mobilize Phase 2 detoxification enzymes. These enzymes neutralize highly reactive, dangerous forms of cancer-causing chemicals before they can damage DNA and promote cancer.

"A comparable amount of chemoprotective activity . . ." Photo: Keith Weller Dr. Jed Fahey examines young sprouts. 1500x2100, 300dpi TIFF JPEG (2.3 MB)

Sulforaphane "is a very potent promoter of Phase 2 enzymes," says Jed Fahey, plant physiologist and manager of the Brassica Chemoprotection Laboratory at Hopkins, and broccoli contains unusually high levels of glucoraphanin, the naturally-occurring precursor of sulforaphane.

However, tests reported in the new study showed that glucoraphanin levels were highly variable in broccoli samples, and there was no way to tell which broccoli plants had the most without sophisticated chemical analysis.

"Even if that were possible, people would still have to eat unreasonably large quantities of broccoli to get any significant promotion of Phase 2 enzymes," Talalay says.

Clinical studies are currently under way to see if eating a few tablespoons of the sprouts daily can supply the same degree of chemoprotection as one to two pounds of broccoli eaten weekly. The sprouts look and taste something like alfalfa sprouts, according to Talalay.
Talalay founded the Brassica Chemoprotection Laboratory, a Hopkins center that focuses on identifying chemoprotective nutrients and finding ways to maximize their effects. Brassica is a plant genus more commonly known as the mustard family, and includes in addition to broccoli, Brussels sprouts, cabbage, kale, cauliflower and turnips.

"Man-made compounds that increase the resistance of cells and tissues to carcinogens are currently under development, but will require years of clinical trials to determine safety and efficacy," Talalay notes. "For now, we may get faster and better impact by looking at dietary means of supplying that protection. Eating more fruits and vegetables has long been associated with reduced cancer risk, so it made sense for us to look at vegetables.

"Scientists currently need to continue to develop new ways of detecting and treating cancer once it is established, but it also makes sense to focus more attention on efforts to prevent cancer from arising," he adds.

Fahey and Yuesheng Zhang, M.D., Ph.D., a postdoctoral fellow, are also authors on the PNAS paper.

Work in Talalay's laboratory is supported by the National Cancer Institute, philanthropic contributions to Brassica Chemoprotection Laboratory, and grants from the Cancer Research Foundation of America and the American Institute for Cancer Research.

Talalay is establishing the Brassica Foundation, a foundation that will test and certify chemoprotective vegetables such as sprouts to raise funds for chemoprotection research.

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!!