Monday, October 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%!

Tuesday, October 25, 2011


Took this while I was in our room waiting for results. Never the sight you want to see. A sober reminder of what we're going through. It's real. It's growing. It has grown a lot (for my type). They had been watching a section of tumor and it has almost doubled in size. They're also watching a different area that is a conglomerate of cancer cells. My radiation oncologist wants to start radiation. Since Danny was at work, I told the doctors that I needed to discuss the options with my husband. They were seriously upset that I'm not on anti-seizure medicine, but we held our ground (thanks mom & dad for helping my case!).

Right now, even though we all knew this was almost inevitable (other than a miracle), I still hoped I was doing enough to slow or stunt or even completely stop the growth. Apparently, I'm not.

Maybe I can't stop it. Maybe this is just my lot. It's scary and disappointing. I want to hunker down in a hole lined in down comforters. I want a thousand pillows surrounding me, and Dan engulfing me in his hug. I want the two of us to disappear and morph into a dreamland full of bunnies and kittens, and warm breezes.

Sorry if I don't answer the phone, or emails. I need to absorb this. Dan should be home from work soon and we'll need space. Thank you for understanding and thank you for all of the love. I appreciate all of the texts and emails, and posts on the blog. I'm floating above myself, blurry with confusion. What do I do next? What is right? Can I win? Can I beat this? I'm not going to give up, but I do need to regroup.
The MRI was considered "worrisome." We're on the free shuttle from UW to Harborview to meet with the oncologist. The scans were heart dropping. My stomach is in knots. I feel like crying, I'm nauseou s and I want to curl up in bed with Stella. Since I have to keep my chin up and head to the gamma knife center for this impromtu meeting, I'm glad I wore my slippers :) More news to come.
Woke up at 5:30am and can't sleep. Dad's drinking coffee, cup by cup, and I'm trying to relax. Mom's asleep and Danny's at work. Two more hours and it's game on! I might as well shower, my curly hair is fluffed up to no end. I look like a muppet.

Monday, October 24, 2011


In 24 hours I'll be back in my bird machine, feeling the pulse of the magnet. Here's to hoping for zero new growth!

Sunday, October 23, 2011

Emotional Eating

Bad foods cannot live in my house. I only have self control when I have no other option. Unfortunately, Danny and I bought Halloween candy on Friday, and I have been devouring it. I can't stop myself. It's horrible!! I think I'm emotionally eating because I'm scared for my MRI. It's not just the results, but also everything that comes with it, the needles, the IV, the contrast dye, the machine, the smells, the other people in the beds next to me (some with obvious recent surgeries, others not so easy to figure out), it's everything.

I am 80% sure that I will not do radiation even if they recommend it. I have heard over and over from all of the doctors, that radiation will not extend my life. They claim that it's supposed to improve the quality of my life, but looking at the seizure medicine and how they said the meds would improve my quality of life (what a joke), I feel like I have to do what feels right to me, not what the doctors say.

I had a nightmare the other night. I dreamt that doctors administered radiation while I wasn't paying attention. They concluded the radiation several months before I realized, and I didn't notice until I reached to feel the back of my head, quickly realizing when I had a massive bald area (it's very common for radiation to kill the follicles around the tumor area - often never growing back). When I woke up, I felt around on my head for any abnormalities, taking care to touch every single millimeter of scalp. I have incredibly vivid dreams, to the point where sometimes I don't know if I've dreamt something or it's a memory, so it was incredibly scary. I woke up sweaty and panicked.

Anyway, even though I'm pretty positive I will opt out of radiation (at any point), it's still scary and it obviously weighs on my subconscious. It's completely counterproductive that I gorged myself on Halloween candy. I wish I wasn't an emotional eater.

Thursday, October 20, 2011

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

Wednesday, October 19, 2011


A very good friend, Meghan (you may remember her from other posts, or her parents who housed Danny while he was training in Portland), has a non-profit philanthropy called WPIG. She knows I love to paint, and although I didn't have the energy to do it last year, this year, I created! It's not the masterpiece I envisioned, but it definitely depicts my personality.

There's an art auction in Fremont, at the Fremont Abby Arts Center, on Friday November 4th at 7:00pm. If you're going to be in the area, buy tickets and come! I guarantee that with this crew of WPIG members, and WPIG supporters, you will have an unforgettable night filled with laughter, smiles, hugs, handshakes and beauty. If you can't attend, and you're interested, there's several different options to donate on the WPIG website.


The art auction is a fundraiser for Ryther. I highly recommend you check out their website; my favorite tab is, Ryther Voice. It's incredibly inspirational and moving. I think the best virtue in humanity, is kindness, and Ryther is full of volunteers and workers that are forging to make our world a better place. There are so many kids that need help getting on their feet, and at the risk of sounding preachy, I believe that when people strive to meet their potential, we all succeed.

About Ryther:
"We serve children and adolescents referred by parents, physicians, state agencies, courts, schools and other providers working with children. We have expanded our services to include programs and solutions for families with children who have challenges stemming from trauma, mental illness, substance abuse, Autism Spectrum Disorders, or adjustment issues with school, peers or parents." -

I know that there are a million, or actually billions of places where people can donate their time or money, so please don't get overwhelmed. Wherever you can donate, to any cause that's dear to you, just do it. Even if it's $20 or old books that your children don't read. There's always a place for reused things. Over the past year and a half, since the original diagnosis, I've received financial gifts in the mail, money in a donation account, cash stuffed in my hand, and I'm telling you, $20 melds into $100 and all of a sudden a payment on a bill is paid. It has all been out of the goodness of people's hearts, too. I've cried multiple times from the generosity. It's just overwhelming. I like to think that money has a life of its own. It passes from hand to hand, and to me it represents kindness, generosity, piece of mind, well wishes, and wherever I donate, or pass on my money, I hope it sends love around the world, weaving its beautiful little way on the path that it takes. I am in a great position to give to the Ryther organization. I might have medical bills, and a crazy brain tumor which requires expensive alternative treatments, but I can still give a small amount. A little bit goes a long way. I challenge you, next time you see something you believe in, donate $10 or $20 dollars. I guarantee you won't even know it was gone.

Friday, October 14, 2011

Mushroom Madness

Yesterday, to get myself out of the dumps, I jogged to the bank and deposited some checks. Outside, on the street below a 'no parking' sign, this is what I saw. Mushrooms. A gaggle of mushrooms on the street. This is how damp Seattle is. I love it! Good old mushrooms. The sucker outer of toxins. I took it as a good sign.

Thursday, October 13, 2011

Some Days

There is definitely a system to the sadness: three good days, one bad. I've been trying to jog around Greenlake to make my moods better, and it always works. The hardest step is the first one, out the door. There's a pulse; the path vibrates with heartbeats. I visualize a hum hovering over the runners, the walkers, the strollers, the bikers, a collective sound of conversations and thoughts. It's unintelligible, but that's perfect. Leave everyone with their privacy. 

My next MRI is mocking me, poking me with its' bony, skeletal finger. The last MRI showed some growth. Not enough to do anything, but some growth is too much. Each day, although I know that I have a brain tumor, I wake up and live my life. I walk downstairs, put the tea kettle on the burner, and wait for the whistle. Sometimes I leave the house, and sometimes I don't. Sometimes I take care of emails and important things, but other times I just don't have the energy. Even when I'm exhausted, I still like to think that I'm the same as any other person my age, but the truth is that I'm not. 

I am too tired to work. I'm too tired to take care of lots of things in my life. It is too much to deal with bills and email, and stuff. I'm sad that I can't do all of the everything I used to. I'm sad that I have a new version of normal. My head hurts. I'm scared. Some days I'm carefree, and others, like today, I'm just sad. 

It's hard to win this game. 

Friday, October 7, 2011

Lopsided Unicorn

I've been doing too much and it always catches up with me. Two days ago, I couldn't get out of bed. I was too exhausted. Brain tumors suck. It always works like this. As long as I get 12+ hours of solid sleep each night, I can function really well. If I get less than 12 hours, my head throbs constantly, I'm exhausted, I'm dizzy, my mind's cloudy, and I am unable to function. I'm not even capable of reading a book, it's too tiring. The worst part, is that I'm unable to nap when I'm at my worst. I just look like a zombie, shuffling to the bathroom and back to bed. I swivelled to the foot of the bed so that I could stare at bingie my gray cat. Luckily, he sleeps all day so I had company.

When I'm doing well, and I'm rested, I feel like I can conquer the world. I'm ready to try and take buses, or walk around the lake, even cook a new recipe, but when I crash, I really crash. It's exhausting.

Also, when I'm exhausted, and without enough sleep, the screw in the front of my skull hurts more severely. I can't remember if I've mentioned the fact that I have a screw loose. Literally. I started noticing it in May. At first my oncologist's nurse said it was a ball of nerve endings, not a screw, but I had a feeling she was wrong. I kept telling Danny that it's a screw, and it's going to get worse. When I went to the headache specialist in July, she said it was noticeably the screw from the brain surgery. Apparently, my body is slowly rejecting it. The only thing they can do is another surgery, but at this point I feel I'm better off managing the pain by getting enough sleep and using over the counter medication.

I never thought that the screws would come loose. I assumed that surgery was a one time deal, or until tumor growth. Apparently, according to my doctors, it's very common to have your body reject screws, it's just not supposed to happen for years and years. I wonder how long it will take my horn to be noticeable to others, right now I can disguise it with my poofy bangs. Maybe I'll be a devil for Halloween since I already have part of the costume. Or, I guess I could be a lopsided unicorn. Either way, at least I have options.

Monday, October 3, 2011

Tossing Frizzy Hair To The Wind

I read a quote today that really got me thinking. "It's only in the present moment that we find real happiness, love, or wisdom." If we're reminiscing about the past or anticipating the future, we're not enjoying our life as it is. I'm completely guilty of that. It's impossible to always be in the moment, but I think it behooves me to just take things as they come.

I enjoy fond memories, and I love my time in fantasy land for the future, but truly, my happiness is definitely in a single moment, changing into the next single moment. It's as simple as watching a squirrel bound across the street. Life is always changing, it is never stagnant.

It's hard not to anticipate upcoming events, like my next MRI on the 25th, but I am making a conscious effort to just take it easy. To me, taking it easy, is finding things in my surroundings that make me smile. It's as simple as the smell from the laundry when I'm folding clean clothes. Or, it's a leaf that's suspended in an almost invisible spiderweb imitating a baby bird (that actually happened this morning - it was freaky).

Living in Greenlake has opened me up to a whole new world. There are cars driving past our window, kids walking to school, joggers racing by, squirrels running with nuts in their mouths, and the wind constantly swirling things all over the place. I feel alive here. When I'm stressed (for example just about an hour ago), I bundle up, walk over to the lake and wander around on the path. I have a massive park just outside my doorstep. It's unbelievable. Earlier, I even went in the rain. For my college friends, they will be shocked. In the past, I blow dried my hair to perfection, then either flat ironed it or made the perfect waves to look natural. If my hair was going to get ruined by weather, I wouldn't go outside. It's embarrassing. Now, I toss on a raincoat, lace up my sneakers, and throw frizzy hair to the wind. What a change!

I feel lucky. I'm happy to be alive.

Sunday, October 2, 2011

Racing The Bus

Metro was a success! Our place is less than a ten minute walk to the downtown bus stop. I came with my pockets jingling with change, and my heart racing. I was excited and nervous. So much so, that when the bus was driving through downtown Seattle I hopped off a bit early. Like eight blocks. Oops. I was scared to pull the cord to stop the bus so I just followed some people and hopped off the steps.

The best part is that as I was walking, the bus kept dropping people off, then stopping for lights. I was going back and forth racing the bus for at least two blocks. It was hilarious and slightly embarrassing. When I told him what happened, Danny said I shouldn't be embarrassed, but instead I should be proud that I kept up with the bus. Of course, he was laughing hysterically when he said it. It's ok though, I was blushing and giggling at myself as I wandered through the streets of Seattle, headed to Capital Hill. It was one way to learn the city, I guess :)

Dr appointment went well. They're getting my pathology for a second opinion and then they'll book the procedure. The doctor was absolutely fabulous, Dr Miller at Virginia Mason. I lucked out and was randomly booked with him. If anyone needs to meet with a dermatologist, he's incredibly kind, intelligent, and to the point, a great combo.

Related Posts Plugin for WordPress, Blogger...
Back to Top