Not Mutually Exclusive

Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.

Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.

At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.

It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Guest Blog

Here is my guest blog, posted on www.suvivorshippartners.com

What does it mean to advocate for yourself?

It means survival.  Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer.  I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science.

According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate.  Sound like fun?  No.  Nope, the outlook is horrible.  Is that acceptable?  No!

If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options.  You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already.

At first, I believed my doctor’s words and thought that there was nothing I could do.  My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want.  They said I should live my life however it makes me happy.  It sounded nice.  I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines.  Yum! But, something didn’t sit right.  It just didn’t make sense that my food choices didn’t matter.  I mean, wait a minute, I had heard that you are what you eat?  If food is fueling my body then it doesn’t make sense to load up on junk.

I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it.  Then, here and there, I kept hearing stories of survivors of brain cancer.  There are only few, but I realized that those few have valuable keys to survival.  That became my new goal, copying survivors.

There is so much that you can do, including supplements, diet, exercise, meditation, clinical trials, etc.  When I came out of my brain surgeries (there were two consecutive) my doctors told my family and me that I have a 1% chance of surviving this cancer.  Scary!  At least it sounded scary, but once I started researching alternative treatments I realized that I can increase my survival by several or tens of percentages.

You can not be afraid to do hard work.  You can not give up (except for once in awhile when you really need some ice cream).  Each cancer is different.  Become an expert on your diagnosis, on the treatments, on the survivors, on the diet, on the mechanisms of cancer cell division, of how the cancer feeds itself, and what the cancer cells are comprised of.  I know it’s a lot and it takes an incredible amount of energy, but that’s what friends and family are for.  Don’t be afraid to delegate.  People want to help you, they want to see you survive.  Everyone loves the underdog!  Yes, you are going to be exhausted, and sometimes you won’t want to go on, but you have to.  You need to.  You must.  You can do it!

You must be your own advocate.  If a treatment doesn’t feel right, or if the risks outweigh the benefits, you don’t have to do it.  For example, my radiation oncologist has been trying to force me into doing radiation, even though he admits that it will not extend my life and that there are very serious short and long term effects.  You are a customer in the medical system.  Your surgeon, your oncologist, your radiation oncologist, each nurse, they all work for you.  I’m not recommending that you give off an attitude because that’s just unnecessary and rude. But keep that in mind while you are in appointments.  You deserve to be treated with kindness and respect.  This is your body, your life, and your survival.

If you want to survive, and I believe that we all have the ability to do so, advocate for yourself.  It’s the biggest challenge you will ever face.  Contrary to common belief, you’re not fighting the medical world, you’re fighting yourself.  Once you stop fighting against your sadness, or disappointment of your illness, you can dust yourself off and decide that you are your own best treatment.

About Jessica Oldwyn

On April 13th, 2010 at age 29, Jessica was diagnosed with a tennis ball sized brain tumor. The classification is an infiltrating/diffuse astrocytoma (a type of glioma) tumor. Within several days she underwent a partially awake craniotomy, with a second emergency brain surgery to follow. This is her life, living with a brain tumor. Visit her website atjessicaoldwyn.blogspot.com

View all posts by Jessica Oldwyn →

Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.

I Always Bounce Back

I woke up smiling! YESSSSSSSSS. I'm back!!! Happy Jess is here again. I think it's because I had a nice cry last night. As we were going to sleep, Danny wrapped me in his arms. I felt engulfed in warmth and love. It's so important to feel safe, and loved. Both Danny and I are surprised by how the doctors effected me. I knew they would want to put me back on seizure medicine, and that they would probably try and strong-arm me into radiation, but what I didn't anticipate was their hostility. I just don't think there's a need to treat people that way. Almost everything in the world can be discussed in a nice way. That's what I think anyway. Not that I don't get sassy sometimes, but all in all I try to be kind, and think about the other person's position. Egh. Oh well. It's all good - I woke up smiling, and that's what I needed! You can fake a good day, often when you do fake it you turn out being happy anyway, but when you wake up with a smile on your face that is the best!

I'm so glad that I'm feeling happy deep in my soul because today is going to be a bit of a trial. Today is the day that the doctors are going to remove that moderate/severe precancerous mole that they weren't able to completely remove. Here we go, they're going to take a big old chunk of tissue, complete with stitches. I was telling Danny last night that I feel really bad being such a baby, but I'm so done with pain. I'm sick of it, and it's been so long since the surgeries. All I really have to deal with is the contrast dye IV, and that fall while running the other day...ooops. That was embarrassing. Oh well, I'm going through with the procedure, even though I've canceled it before. My body obviously cannot fight cancer very well - or it used to not be able to fight it, the past three months look pretty promising. Anyway, better safe than sorry. Other than the fear of pain, I'm also very upset that they're removing a massive chunk from my smaller breast. Most women (maybe even men) have one breast a little smaller than the other. Of course, my bad mole is on my baby breast. Damn!

You know what, they can chop a chunk of my breast, they can go digging in my brain for tumor, they can boss me around, and that's ok. They won't break me. They never do. They can't break my spirit, and they can't take away my inner happiness. Even if I have a bad day, I always bounce back. No one can take that away from me. That's a consoling thought.

Can't They Feign Interest?

This photo is of the only thing that really put a smile on my face today. I'm down. It's been a long time since I've felt this sad.

Truth be told, in my doctor appointments yesterday, I didn't even whisper a word of my "alternative" protocol. I didn't argue, or give off any sort of attitude. I listened to what they had to say, and asked a few questions. They did not care that I haven't had a seizure in over 5.5 months, they want me on medication. They did not care that my brain tumor had scanned as "stable." They did not smile, they did not encourage. I'm now sure that it must say, "stubborn cuss" in my file because I have refused seizure medicine, and I have refused radiation. In my main meeting I told the oncologist that I'm not necessarily against seizure medicine, or radiation, I just don't feel like it's necessary at this time. He was not amused, and strongly disagreed with my opinion. The doctors do not believe in little successes in my situation. They didn't care that I had been seizure free for almost half a year, or that my tumor has not grown in the past three months. How is that? How can they not care? Or even feign interest? How can they look at me, and handle me in such a way? They see me as a terminally patient that is going to die. How can they not throw me a bone and smile at the little victories?! They look at me and they see a dying girl, when no one else in the world sees me that way. They're looking at statistics, not at me, and that makes me frustrated. They need to look at ME, at my specific situation. I feel like the kid in class that causes too much trouble, so the teacher is seating me in the back and doesn't even care if I learn anything - I'll just be bumped up to the next grade for the next teacher to deal with it, or I'll "graduate" to death.

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.

The Time Will Come

I'm grateful for so much each day. Things pop in my head, and then I start smiling. It can be as simple as, "My house is so rad. It's full of daylight even when it's rainy outside!" Lately, though, I've been going for the big ticket items. My mind has been full of happiness thinking about how wonderful it is that I haven't had a seizure since August 5th (the day before my birthday - I was probably just too excited!). I haven't taken anti-seizure medicine since September 27th. And, biggest of all, as Danny and I were running errands today, I realized that I could have just finished last week as my first week of radiation, but instead, I'm happy and healthy and trying to kill this brain tumor with alternative means. I realize that I might have to do radiation (eventually - if there is no other option, and it starts completely growing like an even nastier weed), but right now I'm enjoying the ability to take this into my own hands.

Yesterday, my parents, Danny and I met with the other brain tumor fighter that has been taking the artemisinin. We met with her and her husband and we shared notes. We talked all about the different protocols, the different research out there, and we reviewed both of our pathology reports and all of our MRIs. It was fantastic and incredibly inspiring. Our friends have managed to completely shrink her brain tumor through alternative means. It's unbelievable. Although we had never met, there had been email after email for the past year or so. We combined heads and together, I feel like we can conquer this.

At first I was very concerned because there are so many different types of stage 2 astrocytomas (which we both share), I wasn't sure if we were matching apples to apples. But after sharing our pathology reports, our friend has the same type, along with the "negative for loss codeletion of chromosomes 1p/q 19p/q (can't remember off the top of my head which one has which letter). Anyway, my point is that I have those two chromosomes, as does my friend, which means that our tumors are more aggressive and signify a shorter lifespan. Anyway, after watching her scans, and seeing her brain tumor shrink and shrink, scan after scan, I knew that things were looking up!

Maybe surviving a brain tumor isn't just about luck, or fate, or genetics. Maybe, just as I was hoping all along, it might be treatable or even curable by using healthy choices, and by following herbal research. There just might be a way to treat a brain tumor with diet and supplements. Sometimes the supplements are in massive doses, but who cares! It could slow, halt, or kill the tumor. Wow. This is so big. I just have to keep positive about this process. I'm taking the safe side, unlike my friend who took some pretty substantial amounts (with no serious side effects), but I figure I can still up the ante at my next MRI if things aren't up to my liking.

I'm just so grateful to have this opportunity to squish this with healthy means. I'm forever indebted to our dear friends.

It is going to be so hard to wait for my next MRI in January. I want to start seeing results now! I keep telling my overzealous soul, "Patience little friend, there is no rush. Enjoy each moment, each day, each kiss, each hug, each laugh, each smile, each apple, each salad, each green smoothie, each new smell. The time will come." Each time I have to tell myself that little mantra, my core warms, my cheeks get rosy, I start smiling, and I feel lighter than air. It's the best. It's my favorite problem to have :)

Truly, how wonderful is it that I am not headed for week two of radiation in the morning. HOW WONDERFUL!!! ! ! I know my oncologist probably thinks I'm stupid, but I don't care. This is my body and my life. I will not give up on it, or take the easy, less effective solution. I will fight, I will laugh, I will live, I will not give up.

Radiation?

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.

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."

I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.

Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...

Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.

An Extra Month

Last Thursday night, I panicked at the date, the 12th. I mistakenly thought that I only had one month before my MRI. For about an hour I thought things were moving too quickly, that I was losing time, and my freedom was coming to an end. The fear of impending radiation overwhelmed me.

I don't know how I figured out my error, but once I did, I let out a sigh of relief. The first thing I did, was go for a run. There's nothing more freeing than propelling yourself through nature. Your movement is on your terms.

Luckily, I now feel like I have an extra month! Funny how that works. The extra month was never taken away from me, only in my mind. What a powerful realization.

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.

Craniotomy, Not That Bad

I'm still sitting here playing the waiting game, which has its ups and downs. On the bright side, I get to spend the weekend with family and friends relaxing, and contemplating what a killer life I have (no pun intended). On the down side I just want them to saw open my head and dig this puppy out so that I can start recuperating.

With all the extra time on my hands I decided to start a fun new game...

Craniotomy, Not That Bad

#1. I have a very close friend whose son was born with Congenital Scoliosis. He's now almost four years old. His case is so severe that in the next 6 months to a year he will begin a series of surgeries on his spine that will occur every 6 months until he's around 16 years old. In the initial surgery he will have a rod placed at his spine, and then with every reoccurring surgery they will slightly extend the length of the rod until he's done growing. This poor little blond fella that looks like he fell off the Jerry Maquire movie case has no idea what's in store for him. His process is going to take over a decade just of surgery, let alone all of the other complications. Therefore, Craniotomy, not that bad.

#2. Another friend, Heather, has a daughter (Hayden) who survived a dresser and television falling on her skull. She was taken to the neurosurgery dept at Harborview Medical Center where a team of doctors had to brace her head, and do surgery by braille to locate a pea sized place in the dead center of Hayden's brain to relieve pressure so that she didn't die. Craniotomy, not that bad,

#3. My uncle Michael (not really an uncle, but one of my dad's best friends) shattered his femur in over 50 places back in the 70's in a mid-west snowmobiling accident. To repair his leg they placed him in traction (hooked up to a bunch of pulleys and wires, with screws placed in the bones once the pieces had been reattached) immobilized him in a hospital bed, and had his leg raised for three months while the bones fused. Wanting to be closer to his wife, they placed him in a full body cast and transferred him via hearse for 28 hours to get back to Seattle. Once in Seattle they immobilized him for another full month. Bedridden for four months. Craniotomy, not that bad.

#4. Another of my friends, Kristen, is trying to support her mother as one of her mother's best friends deals with the tragic news of a malignant brain tumor (almost certainly a death sentence, she was told). The woman is beginning to undergo chemotherapy and radiation. They don't know if she'll live. Craniotomy, not that bad.


Thanks to my friends and family for sharing their stories. There are so many situations that are much scarier, more painful, less hopeful, and more physically and emotionally taxing. We're a huge team of people on this Earth and we get through each challenge together.