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. 

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. 

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....

Cocktail of Treatments

I am happily full. A change from the past few days. It's hard to avoid eating until 11:00 am and stop eating at 4:30 pm. But, I'm okay, I survived again, and happily, I just crammed an apple and a handful of mixed nuts into my mouth. I'm sipping on my broccoli tea, listening to Pearl Jam (it was on the radio). It is so nice to eat an apple, they're so crispy and delicious! YUM. Ambrosias are my favorite, but I also love a good pink lady or honeycrisp.

I have a few minutes before I need to jog around the lake, the long way, and swing by PCC to pick up my  whole milk and a healthy style Gatorade (the real stuff is full of synthetic sugar and food dyes). Today I take my 20 curcumin pills & 5 piperine, then twenty minutes later I blend special sprouts along with 30 pills of xymogen (broken open into the blender) and a little bit of water. I take that drink with whole milk or heavy cream, then I chase it with an electrolyte drink that helps smooth the tummy.

Last week when I was taking the drink, my parents came by and I had them try it (along with Danny). It was hilarious! It's the most horrid drink I've ever encountered. About an hour from ingesting it causes a crazy laxative effect (GROSS), and my dad and I were passing each other back and forth up the stairs to the bathroom. It's completely gross, but it's effective and that's all that matters. This is the special drink that our friends used to eradicate their brain tumor.

It is imperative that brain cancer fighters get together and share knowledge. We can save lives. People are surviving. There aren't very many because most follow their doctor's advice with standard of care even when it's proven to have little to no effect on survival. There are various treatments that have much more success than standard of care, and the information is out there on tumor blogs. Never give up. Don't be afraid to make your own path. You have to fight for yourself, fight for your life. If you come into opposition, which is very likely, stand your ground. I believe that my radiation oncologist, if he was diagnosed with the same cancer, would start researching everything he could to optimize his chance of survival. He is outspoken, extremely intelligent, and believes he is an expert in his field (which is true). Something tells me that he dives into things head on, and he would quickly become an expert on how to save his own life. But guess what, he doesn't have brain cancer and therefore does not have the energy or time or desire to devote his time. On a related note, here's another quote from my current book:

"The current medical system does not provide the best possible treatment for cancer patients, and especially not for those with brain tumors. In my own case, I would likely be dead if I had followed the advice of my neuro-oncologist. My prognosis was dismal. Rather than simply accept this small chance of success, a patient is better advised to look beyond the standard protocol for additional treatments. Different treatments have different mechanisms of action and the laws of probability imply that the more treatments a patient uses, the greater the chances that at least one of them will succeed." - Ben Williams (Surviving "Terminal" Cancer)

I am just shocked by our cancer care in the United States. Everything is dictated by our government, specifically the FDA who favor pharmaceutical companies and their multi-million dollar trials. It's important for cancer patients to remember that just because there hasn't been a trial proving efficacy, that doesn't mean a treatment is ineffective. Cancer patients are taking their lives into their own hands, choosing to save themselves. If all of us cancer fighters band together and share knowledge, which they are doing, we can save ourselves. Screw these doctors that aren't trying to save our lives. We will just do it ourselves. I will not give up, no matter how many headaches, stomach aches, pain, frustration, exhaustion, or sacrifice. I will not give up, even though sometimes I want to climb under the covers, crying, with a 10 lb bag of peanut M&M's and a pint of Karmel Sutra from Ben & Jerry's.

Life makes me want to cry when I think of everyone dying because they can't stand up to their doctors. I am not saying that the doctors are bad people, they're just ignorant. They don't have the time to research the various options out there for cancer patients, and trust me there are many, many options. I'm continuously reminded that it's important to do a cocktail of treatments that work synergistically. It's just like health. If you just cut calories, you'll lose weight but you will lose muscle mass and you won't alleviate the initial problem of why you gained the weight in the first place. It is widely known that you need to change your diet, your life style, your exercise routine, and your mental state to successfully keep the weight off. There's no easy answer in life, success comes from a whole body approach and I believe that's true with everything.

Here's a photo from yesterday. Although my suet has not attracted any birds, my sweetheart neighbor Beth Ann moved her bird feeder out so that we can both enjoy the feathery cuties. Maybe it's time for me to take Elliot's advice and put something I like underneath my feeder. If only there was a way to hang it above our car, that would be perfect :) I bet I would quickly have a Hitchcock moment.

On another note, today is the anniversary of our vow sharing beneath the Eiffel Tower. (Our actual marriage became legal in July, when our friend Clay signed our certificate as a justice of the peace.) What a miracle of a man. Dan is a main reason why I work so hard, fight with such effort, and yearn to live. He treats me with such kindness, showering me with compliments each day, telling me how much he loves me constantly, loves me when I'm bald and bloody, and is always attracted to me despite obvious ailments (like staples on my head or stitches on my breast). He is my perfect man, and I am so grateful that I get to spend my life with him! I don't know how I am so lucky, but I will not take it for granted. He is my version of perfect. I'm so glad that I didn't settle for anything less than Danny. Now, I just need to find a way to enjoy his company for years and years and years. Danny literally knocks my socks of in every way. What a gift!

Final High Dose Day (First Round)

I got a little nervous yesterday morning, fearful of a seizure, so I started with a 3-3-3 (butyrate, artemether, and piperine) instead of the 4-4-4. I took the pills at around 9:45 am and then I grabbed the necessities, a tall glass of water, the cordless telephone (in case of emergency), pre-seizure pill (just to be safe), several books, Emma and Mr Bingie for cuddling. The morning was quite uneventful, though. I quarantined myself in bed until 12:30 pm when I was starving and had to head down for some breakfast.

Since the side effects were nil, I decided last night to do 4-4-4. No effect, and this morning I took another 4-4-4. Tonight is the last pill set, and from then on I'm just going to focus on my diet, and exercise. I need to read up on anti-inflammatory foods. My biggest focus is on reducing inflammation so that the MRI scan shows as clearly as possible.

I'm excited about this MRI but, of course, I'm a bit nervous. My body feels wonderful, I have more energy than I've had in ages, my skin is clear, I've lost around 18 lbs (I had packed on some weight after the seizures). When I originally checked in for brain surgery in April of 2010, I weighed 151. I now weigh 141. The great part is that I still have fat on my body. I honestly didn't know that I had THAT much body fat. It has been pretty eye opening. I still wear the same clothing size, but everything fits better. That's nice. You'd think that the fat-loss of this diet would be the best part, but it's not. The most exciting part of these past several weeks has been the way that I feel. I am healthy and alive. It's miraculous.

On a side note, I had a crazy dream last night. I have a habit of having those. I dreamt that I was in a remote area down around the Mississippi sound, somewhere in south Louisiana. I was in a house on a hill, overlooking lush green trees and the beautiful water. Danny was working on an oil rig in the bay, which I could see from the living room window. On my hip was my friend Jenny's three and half year old daughter. All of a sudden, from the south east I noticed a funnel cloud over the water. I remember saying, "Look Bailey, see that funnel cloud?" I glanced over my shoulder, and when I looked back there were three, one headed directly for our house. I ran to the next room and ushered her into the bathtub with my mother. With nowhere else to hide, I returned to the living room and scrambled under a table, taking a deep breath. I was aware the tornado/hurricane, would be crashing down immediately. I took another deep breath and closed my eyes as I heard the crashing of glass all around me. I felt my body levitate in air and I sensed that I had been caught up in the whirlwind. My biggest concern was the impalement of some sort of foreign object, but I understood it was out of my hands. I didn't panic, I just hoped that everyone in my life knew that I love them all dearly. I remember the whooshing of the wind, and the centripetal force. I hoped I would survive, but I knew I had to acquiesce to the forces around me. The next thing I realized, I was waking up surrounded by debris. The sky above was a crisp blue, and I was completely uninjured. I dug around to find my mother, Bailey, and my father, and they were all unharmed. I hopped in a car (my college car, Buttercup, a 1979 diesel which I've long since sold) to head down to the waterfront to find Danny. As I was driving, people were walking, looking for people, some were crying, others were in shock. Then I woke up.

More "Hope"

The first day of 2-2-2 twice daily went great yesterday. I was dizzy and felt a little bit disconnected to my limbs, but that's no big thing. I was able to avoid eating until noon, at which point I made a homemade humus bok choy sandwich, and ate an apple. The most noticeable side affect came at 11:01 am (I'm taking copious notes). I had a sharp pain in my head, then I had a rushed taste of metal in my mouth. Within seconds it was gone. I'm hoping that it was a massive explosion of cancer cells, that all of the iron spontaneously combusted, and now my body is flushing out the debris. A girl can dream can't she?!? :)

It's nerve wracking to put myself out there with this new treatment. I kept worrying last night, what if it's a bust? But then, while we were laying in bed, I asked Danny to give me his mental illustration of the artemether as it gets digested. Of course he leant to a military analogy. He kept saying things like, "The artemether soldiers are marching through your intestines." And I asked, "Are they singing a marching song like the do in the movies?!?" It was fun to take the stress out of the situation. I'm lucky to have a man that will play along.

Today I have a break from the artemether, piperine and butyrate. Tomorrow, though, we double the dosage and take the pills twice. Instead of the 2-2-2 twice daily, it will be 4-4-4 twice daily. I'm excited and nervous at the same time. I keep telling myself, "Why not believe that I can beat this. Why not believe that the artemether will work. Why not believe that I can change my destiny. Maybe ridding myself of this cancer IS my destiny!"

I want this protocol to work so badly, not just for me, but for all of my friends that I've met that also have brain cancer. I am in the perfect position to try new things. I have a supportive husband that never ceases to amaze me. I have a great family that helps me stay on track that researches all of the alternatives. I have friends that walk hand in hand with me, that keep me laughing, and smother me in hugs. I don't have the responsibility of children. I have the drive to stay on course. I want this to work so that I can be a guinea pig to help others change their destiny too. There is no reason why we can't beat this. Doctors don't even really know what causes brain cancer. They believe it could be a wide variety of things. If there are a wide variety of causes, then it's fair to reason that there could multiple cures. We just have to figure them out! And, if this artemether doesn't work, then that doesn't mean that other things won't.

Here's a fun photo from last night's dinner.
It looks pretty boring, but it was surprising filling.
Shown: Homemade spinach and jalapeno humus, raw broccoli (for dipping), and an everything but the kitchen sink salad (purple kale, arugala, spinach, green onions, garlic, tomato, avocado, fresh cracked pepper, squeezed lime, & extra virgin olive oil)

Danny is such a sport. Often nights, dinner is a simple meal. Last night might have been the most simple meal in a long time. I think, maybe, I was trying to make up for the naughty martinis from Saturday night. Like I've always said, I have to be just a little bit bad or I get stir crazy. The little gremlin in me needs to be fed, then I can go on with strength and determination.

On another note, I have an amazing story of friendship and love. I have no idea how my life has been so magical. I am the luckiest girl. I have been surrounded with literally, living angles. Do you remember the piece of art that I made for my friend Meghan's philanthropy? It was called, "Hope." Anyway, last night, Meghan stopped by with a huge package, she had called earlier, asking for help. When she arrived, she started cutting open the package, and I just assumed she needed a bunch of cutting done for someone's Christmas present or something. Nope. She needed me to sign a few things....

Meghan bought my piece of art at the WPIG Pigture Perfect Art Auction so that she would have the rights. She then came up with the idea to contact a bunch of my girlfriends (shown below in the row boat), to chip in to start a site on Etsy.com to fundraise. It's called Hope For Jess and it's prints of my piece of art. How cool is that!?!

The girls paid for all of the prints (there are regular prints and canvas prints). Megs said that the prices are a bit dear, but that's okay. If they don't sell, maybe they can put them on sale :)

Girls Weekend 2011
Top: Libbey, Lauren, Kristin, Jenny, Michelle, Laura
Bottom: Jessaca, Meghan, Julia, Me
Not Shown: Jessica (Abu Dhabi) & Courtney

I am still, so blown away. This is exactly why I should be doing this protocol, and whatever protocol may come my way in the future until we figure this out. It is imperative that someone like me work as a guinea pig so that others that don't have the energy or time, or resources, can get well. I constantly feel love and support, and I am just so grateful for all of the friendship and generosity. I feel like we're all working together as some sort of badass team, working for the greater good. Maybe that's a lofty attitude, but it's just how I feel.

On a final note, I am happy to share that three years ago to the day, Danny and I had our first date. It was the most magical night of my life. At one point, he insisted that he carry me like we were going over a threshold, all because it was snowing and I was wearing heels. It was perfect in every way, and it makes me cry with big fat tears of joy that we came together. He makes me happy from morning to night. Even when we're cranky there's always laughter. If you've never met him, I'm sure you can tell how amazing he is from the stories on the blog. He has never wavered in his support or love. He found me sexy even while bald with 52 bloody staples across my head. He shuttled me on two hour drives in each direction to doctor appointments, to rehabilitation appointments, his dedication never wavered. When we didn't know if I'd read again, or get back to running and living my life, when I could only use one syllable words, and we didn't know if I would ever have enough energy to truly LIVE, he was happy just cuddling on the couch, or resting silently. I know that he is my soulmate, that I am the best person I can be because he supports all that is good. A partner like Danny is a miracle to come by, and I think about that every day. When I'm stressed, I just picture his face and it soothes me. He is a main reason why I have the will and desire to strive for perfect health. I know it will be an ongoing journey for the rest of my life, but with Danny by my side I know I can do it! Cheers to Danny, my love.

Pursue New Understandings

This weekend, Danny and I first stopped at my parent's house for a slumber party (when leaving, my mom loaded us with two of every vegetable available in the organic section from her supermarket - gotta love moms!), then headed to an Elves getaway over in Chelan at a friend's lake house. It was so much fun goofing around, listening to music, relaxing in the hot tub, and laughing with friends. Since I was off the artemix, I even enjoyed a couple of martinis. Friends and family truly are the best medicine.

Coming Up Over Navarre Coulee

Now, I'm back at home and I've just finished the first dosing of my artemether (9:15am). Calculating it by weight (thanks Dad & friend), I am starting with two pills of the following: artemether (40mg ea), butyrate, and piperine. I take it on an empty stomach. Then, I refrain from eating for a few hours (two or three, as long as I can manage). During the day I eat normally, but I need to stop by 4:30pm so that I can take my second dose (same quantities) on an empty stomach at 9:15pm.

I'm excited and nervous to see what happens. Today I'm starting with the 2-2-2 twice a day, and tomorrow I'll do nothing, making sure that there aren't any odd side effects. Assuming everything's okay, on Wednesday I'll start 4-4-4 twice a day.

When I first started taking the artemix, back a few months ago, I remember getting very tired and periodically dizzy. I'm already feeling the dizziness. It's probably a good time to go lay down and see if I can read or just rest my eyes. I think this week is going to be pretty subdued while I do this extra dosing. I'm only going to do this protocol for one week, then, after that I'm going to work on building my immune system. I need to clean up any cancer cell die-off that is occurring so that it doesn't skew the results of the MRI.

On another note, I've been thinking a bunch about what it means to be happy, and I read this:

"Genuinely happy people do not just sit around being content. They make things happen. They pursue new understandings, seek new achievements, and control their thoughts and feelings. They also learn from others." What a great quote.

I'm Pooped.

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

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

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

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