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. 

Navigating, Always Navigating

On Friday, I was walking between doctor appointments and passed a bush of wild-ish roses. The smell was intoxicating. I find that since I don't drive, I notice so many beautiful things each day, things that I wouldn't have noticed if I was whizzing by in my car. It's a much slower pace of life, and it's a gift. 

I'm completely overwhelmed lately. I have a wonderful new primary care doctor, and a fabulous naturopath, but I'm still reeling from all of the information and reality of my new treatments. Suddenly, my cancer seems painfully undeniable. I've been galevanting around Green Lake, taking care of myself with the low doses of artemisinin and diet, and I thought that I was really fighting Herman, but compared to the other cancer patients that I'm meeting, there's so much more that I could do. That I have to do, and, all of a sudden I feel catipulted into the cancer world. Before, I realize, I had one foot in and one foot out.

There are so many treatment options, and I need to exhaust them all, all at the same time. In about an hour I'll jog to a bus stop. By jogging a couple of miles, I'll avoid having to take two more busses. I'll head to my naturopath's office to start the first high dose vitamin C IV. On Friday they had to draw blood to make sure that my body could handle all the things that they'll be injecting. I'm currently downing an intense sprout smoothie which should work synergistically with the IV treatment. It's all about timing and combining, so I'm adding various things to increase the effectiveness. It's enough to make a person crazy.

I've just finished ordering some various equipment to create our amazing chemo drink, and now I'm just trying to figure out what to do next. We have to start growing a sprout farm, literally, in our house because it takes several trays to create just one morning drink, and I'm supposed to drink it every day. And that's just the sprout drink, in the evening it's time for the chemo drink. Between those two creations, I'll be going back and fourth with the IVs (curcumin, vitamin C, resveratrol), supplements, and possibly the artemisinin (it should be synergistic according to my naturopath). Oh ya, and the fun part, I need to get a port surgically implanted into my chest for all of the IV treatments.

I'm trying to be cool, but I don't even know how to organize all of my treatments, the growing of the sprouts, the ordering of pills, the busses to treatments, the management of our household, aaaaaaaahhhhh, I'm going to spontaneously combust before I've even begun. 

Time To Work

Started playing with my pills this morning. Not exactly the beer can towers of college days. Yesterday, at the gym, I weighed myself. YIKES. In January at my last MRI I weighed 144. Now, I weigh 150. I guess I need to take this a little bit more seriously. It was quite the wake up call. Dan and I talked about it for quite a bit last night. We are very strict right now, this whole week I'm on a plant based diet (other than a glass of milk each morning and evening for pills). We're going to take Saturday off to celebrate Saint Patty's day with friends, but come Sunday we will be back on the whole foods diet of months past. We will not be cheating again until after the MRI. It's been a lot of fun, but it's time to get back to business. I have to say, when I stepped on the scale and had to move the little black weight over further and further to the right, my stomach pulled into knots and my sweat pores started tingling. I was in shock.

Oh well, I can get this back on track. I love taking a week or so of only eating plants. You can eat whatever you want, as much as you want. It's actually a lot of fun. That probably sounds crazy, but it's fun to change it up. Damn. 150? Ugh. Jessica Lynn. I'm not so upset about the numbers necessarily, it's more the fact that any extra weight feeds Herm. That's always the kicker. But, each day, each meal, I decide what I'm going to put in my mouth and each step is a choice. I'm ready to conquer this next month and see what's going on in my brain at the MRI. I have to relax and play a little, but now it's time to work.

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%!