Showing posts with label malignant brain tumors. Show all posts
Showing posts with label malignant brain tumors. Show all posts

10.31.2011

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%!

8.13.2011

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:

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!!
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