Happy New Year

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

Courtney, Wade/Toby, me & Isla

 Isla & me down by Green Lake

My newest nephew Wade/Toby

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

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

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

Cheers to another amazing year!!

Brains Behind The Operation

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

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

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

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

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

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

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

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

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

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.

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%!