Toom-ah What Stinkin' Toom-ah

Pray For RJ

2012-01-31T09:07:00.000-08:00

Thanks for the help putting things into perspective. After talking to my think tank, we have decided to revamp my dosing schedule. Now we're looking at 3 days of high doses, twice a day. Then I'll have four days off. On the days off, the first day will be high doses of curcumin & piperine, then twenty minutes later I'll do a power packed smoothie with upland cress, and daikon radish. About three hours later I'll do another smoothie - same kind. A few hours after that I'll take a bunch of shark liver oil. Then on the next three days I'll start off with the upland cress each morning, and eat the regular healthy diet per usual. It's going to be much easier to know that Monday - Wednesday is high doses, Thursday is curcumin-ITCs-shark liver oil, Friday - Sunday is ITC shake in the AM and regular healthy food for the rest of the day.

I'm a creature of habit, and this schedule makes me happy. It feels manageable. I shouldn't admit this, but even when I go to the hospital for MRIs, I always go back to the same bathroom stalls. Weird huh.

Enough about me. I just hopped on Facebook, and I saw something that broke my heart. Please take a look. This little boy is fighting a neuroblastoma. Horrible, horrible stuff. This poor sweet little child is so strong to go through these horrible procedures. This just breaks my heart:

Photo taken on 1/22/12

Photo taken on 1/27/12

Here is a link to the website where you can donate if you have the means: DONATE FOR RJ

To help share the story on Facebook, here the link: RJ "Tough Guy" Kaufman - Kickin' Cancer's Butt 1 Day At A Time

For the record, I don't know this family, I was just so touched by RJ's story. Please help me pray for him, and support him in any way you can. I can't imagine having to go through this as his mother.

Ok, gotta go. I've got my first official volunteering day at the retirement community. I'm starting off by painting fingernails, then heading to the memory center where I get to help with sittercise. We're doing group exercise from a sitting position. I'm so excited!

Am I A Binger?

2012-01-30T13:50:00.000-08:00

Aaaaaaaarrrgh. I'm a bad, bad girl. I think it has to do with my blood sugar levels. I'm going to blame it on that. This is my routine, I'm sure you've already heard it before, but here it goes: 4 days on high doses, twice a day. I wake up in the morning and fiddle around until I take my pills at about 8:30 - 9:00 am, then I wait three to four hours before I can eat. So....I can eat at around noon or 1:00 pm. Then, I stop eating at 4:00 pm and take the second dosing at 8:30 - 9:00 pm. That only leaves about three to four hours of time to eat. I get full so quickly that I can't even eat that much. I do that for four days then I have six days off. During the high doses I need to avoid my healthy smoothies and high antioxidant foods (they clean out free radicals which I need to help my herbs attach to the cancer cells). By day three I'm starving and craving everything from my delicious green drinks to sourdough, burritos, ice cream, wine, and artisan cheese. Ugh...my body just talks and talks to me telling me all the delicious foods that it needs, IT NEEDS, it says. On day 5, the first day I can eat normal foods, I crave eggs on toast, or a turkey sandwich (totally gross), or a burger (yuck). I crave crazy foods that I never normally eat...well, except for the eggs on toast - that's a special treat about once a month.

On Friday Danny and I ate Mexican, on Saturday I ate a lamb burger, yesterday I ate a burrito. What is wrong with me?!?! I can't seem to stop myself. Eek - am I binger?!? That's so embarrassing.

The first phase, after the October MRI, was so easy. I do well with consistency. It was easy to take my my pills each night. I could drink my green smoothies each morning, and make sure I was done eating at 4:00 pm. Each day was the same, very simple to implement. I like things that I don't have to think about, easy rules that always apply. This whole 4 days high dose, and 6 days off is very difficult to deal with. It probably sounds really easy, I mean, it sounds easy as I type it, but I promise you it is definitely not easy. I believe my blood sugar levels are fighting me. My body loves the green drinks, and for those four days it is tough to avoid them. I feel like my head is constantly spinning, always trying to figure out what I can have or what I need to avoid. It changes so much. On the 6 days off I'm supposed to eat high doses of special sprouts, maitake mushroom supplements, turmeric supplements, ginger drops, shark liver oil, and it's all so confusing. This protocol is, in my opinion, cutting edge. There are no distinct rules other than the whole antioxidant thing, and knowing when to stop eating so that pills will digest properly.

I need rules. Aaaaaaaaaah. AAAAAAAAAH.

I did manage to drink three different fresh pressed juices, full of veggies and fruits over the weekend. That should help counter act the bad food choices that I've made. Sometimes I feel completely crazy. This is one of those times. How can I cheat so badly with my food choices? I don't know. I understand that the bad food feeds little Hermie, but sometimes my body overrides my mind. I now can completely understand people in my position who just flat out don't want to change their lifestyle even though it may save their life. It's hard. It's so effing hard sometimes. When it's sunny outside, I want to walk over to Dukes with Danny and sit on the patio with a glass of white wine and a cheese burger. Or just the wine.

This morning, trying to completely jump start my digestion and apologize to my poor confused body, I made my most powerful smoothie yet. It's completely random, but it was surprisingly good! Be careful though, make sure you're hungry. The below list will make 2.5 tall glasses of goodness.

1 bushel of upland cress (roots removed)
1/2 bushel of cilantro
1 English cucumber (ends chopped off)
1 apple (core removed)
3 carrots (ends chopped off)
1 banana (peeled)
1 inch fresh ginger root (peeled)
1 inch diakon radish, skin and all

I'm sorry for complaining this entire post. It will not always be this hard. I truly believe it's my crazy fluctuating blood sugar level. That has to be it. Somehow it feels better to blame it on something.

Burnell Family Visit

2012-01-27T15:41:00.000-08:00

Look who stopped by! You might remember Ty from my post a few weeks ago, and from a few posts at the beginning of this whole blog. His mother (I always called her Burnelli) is a close friend from Wenatchee. We commuted together from Wenatchee to Ellensburg for a year completing our teaching certificates. She's now teaching, and I of course am not. Look at her beautiful children! So adorable. Ty had a follow up appointment from his surgery. He is such a curious, hilarious, sweetheart, and his little sister, the animal lover, has a heart of gold and the most beautiful storybook curls.

If there's anything that can put a smile on my face, it's my friends and their children. Children are so full of love, full of energy, and laughter. They're like adults on hyper drive and it's so much fun! I need a nap now, I'm not going to lie (I'm laughing out loud as I write this). Oh what fun! Sweet little angels just like their awesome parents. It's amazing how life connects you to people. I feel so lucky to have so many amazing people in my life!

What would we do without the connection to others. That is a scary and sad thought. That's what I think about sometimes in regard to other cancer fighters, or people in general. It's so important to have love and joy around you. I'm lucky because I've always been a talker. I'm really social and with that trait I've been able to meet all kinds of people, and make all sorts of amazing friends. I feel incredibly blessed, so fortunate to have such lovely and loving people that constantly lift me up. There are people that are more reserved though, more isolated and when faced with a difficult situation might be sad, or lonesome who don't have others supporting them. That's why it's so important to try your best to be kind to strangers, you absolutely never know what others are going through. People you pass by on the street, in line at the grocery store, on the bus, or anywhere else you go could have huge burdens - in fact, they probably do, everyone has their story. I'm not suggesting that you have to get into a full blown conversation with people, a simple smile, I think, would suffice. It can be that little of an effort. I know that when a person smiles at me, it feels good. I hope I'm not being too bossy, or preachy. I know I hate it when people do that. If I sound annoying, you can always ignore me :)

Anyway, here's my favorite thing of the day. Tyler gave Danny and I a branch. How cute is that! Sweet, sweet child. He wanted to know if it was going to grow, but I told him it's probably dormant. It is winter after all :)

Her Charm

2012-01-26T15:06:00.000-08:00

Another beautiful walk along Green Lake...

Documenting my love affair with moss

Sleeping Lovers

Last night, I was a bad girl. I can't be good all the time. It's in my DNA, just ask my grandma. Trust me, she'll know what I'm talking about. She's a little naughtier than me, and boy is it her charm. There is no one like her! Sometimes I need to turn on some soothing music, uncork a bottle of pino, pour a glass, take a deep breath, close my eyes and tell myself that everything will be okay. Last night I listened to Lana Del Ray. If you've never heard her sing, she's mesmerizing.

I keep chugging along, but I have little blurps of exhaustion. I'm in a blurp. I think it's related to the fact that I can't run. One more day. Ugh. One more day, except I stretched in my sleep, which quickly woke me up in a rip of pain. A little tear of the stitches which were healing so well. Damn. Tomorrow I'll gauge whether or not I should run. I don't want to get the incision infected. That would be disgusting!

If I can't run, I start to fall apart. I get lethargic, my appetite grows erratic, my mood dives, and I start to feel sad for no reason. It's embarrassing.

Today I started my high doses again. I'm doing a 4-6, four days of high doses twice a day and then six days off. On the dosing days, I can only eat between 11:00 am-ish to 4:00 pm-ish. No smoothies, the antioxidants clean out the free radicals that need to carry the artemisinin into the cancer cells. My fare during dosing days is quite simple. That's why I need to run, I need to feel energized. Green smoothies and running are what keep my blood flowing and happy.

Oh well. This will not last forever. I am lucky to have this opportunity to conquer my brain cancer. Most who have come before me have not been so fortunate. That's what I have to keep remembering. I'm a lucky one.

Smart Bomb

2012-01-24T12:10:00.000-08:00

Good Morning! I just finished making my breakfast drink. Guess what came in the post yesterday......three guesses.....just kidding! It's my Vitamix!! I made a smoothie yesterday with two bushels of upland cress, and a banana. It was pretty freaking spicy, but upland cress, even in dietary amounts helps stop angiogenesis to tumors. Angiogenesis is the generation of new blood vessels, and blood is what carries the food to the tumors. No blood - no food - no tumor. It's the PEITC in upland cress that does the magic. If you can eat foods high in PEITC, your body will love you!

Just a little bit ago, I made a new smoothie - it's so much fun playing with this new toy. The Vitamix came with two cook books (Ani's Raw Food Essentials, and Live Fresh) - both vegan & raw. The recipes look amazing, and I'm so excited to walk over to PCC to pick up ingredients for my first recipe! This morning, though, I figured I'd just make due with what's in my fridge and cabinets. So here's what I did:

One banana
Three large leaves of purple kale (deveined)
Half the blender full of baby spinach
Two to three cups of water (depending on the thickness you desire)

1 Tablespoon of chia seeds, soaked overnight

An overflowing tablespoon of Barlean's Greens

My favorite smoothie glass is Dan's Guinness cup :)
The blending of this machine is unreal.
My old blender would leave chunks of banana, it was so dull.
Not this guy, the drink was so smooth - DELICIOUS.

For my taste, this smoothie was a bit too sweet. Barlean's Greens is very sweet, and earthy. I should have omitted the spinach and just filled the blender with kale, that would have made it more bitter and balanced it out, I think. Still good though - I'm just not used to super sweet stuff.

While I was blending, I couldn't help but dance with Bingie. Life is so great! That article on www.mygreenlake.com was so wonderful, and fun. I'm so lucky to live in Green Lake, and I'm so grateful for the fact that the brain tumor has not grown in the past three months. I truly believe, that if I work hard, and take this seriously, along with my artemisinin, I can heal my body, and say good-bye to Herman. People still don't totally know the most effective dosing, or how often to administer, but researchers are getting closer and closer. Artemisinin is a natural chemotherapeutic that doesn't have side effects (unless you take an absurdly crazy accidental dosage). There are so many stories of artemisinin healing cancers - all cancers. I was forwarded a video from YouTube overnight from our buddy, and it confirms and summarizes exactly what I've been reading with research. It's so inspiring! I'm pasting it below so you can watch it if you choose.

I realize that what I'm doing to try and heal my body is considered "alternative." It's outside mainstream western medicine, and often in our society seen as "quack". The standard of care is surgery, radiation, chemo, another surgery, etc.. But, in my situation I have nothing to lose. I've done the surgery, and radiation wasn't going to extend my life so I don't see why I would fry my brain just in the hopes to slow the onset of symptoms. I've talked to my doctors, both my radiation oncologist, his nurse, a neuro oncologist, his nurse, and even a few residents, but no one seems to be able to come up with a good argument to sell me on this whole radiation thing. I'm not saying I'll never do it (it's dangerous to say never), but at this point it doesn't make sense.

For now I'm going to focus on eating healthy, healing myself cell by cell, happy thought by happy thought, run by run, laugh by laugh, hug by hug, smoothie by smoothie. If you have cancer and you're reading this blog, please know that you're worth the fight. People want you to live. Don't listen to the people that say you're going to die. Don't listen to yourself when you think you'll die. Learn from others who have outlived their diagnosis - they're holding keys that can unlock your survival. Don't give up!

Here's a photo of the lake from yesterday. It was stunningly gorgeous outside, a crisp 50 degrees with a little breeze. I walked and walked and walked, which felt amazing since I can't run yet. The fresh air, and happy faces made me smile. I've decided my favorite thing to see is people walking hand in hand. What a simple and beautiful act. It reminds me how connected we are.

Wow! My Green Lake Story. Literally.

2012-01-23T09:54:00.000-08:00

OH MY GOD OH MY GOD OH MY GOD!!!! They did it!! They wrote up my story on www.mygreenlake.com - and it's so nice!! Wow!!! How cool is this?!?!

I am so damn lucky!!! Yahooooooo!!! What a wonderful morning!! I haven't been sleeping well, I woke up at 1:30 am and went down to watch TV. I was tossing and turning in bed, and each time I moved my little (big) bandage kept getting stuck to my clothes. All of my nerves are still wired since the aura, and the feeling in my right arm has been off, which is really stressful. I needed something to make me laugh, something to make me smile, a happy distraction. So, I went to my DVRed shows, and started watching my reruns of Ellen. She's SO FUNNY. I was literally laughing out loud. I'm so glad our television is in the garage, otherwise I would have woken Danny. The best was when Ellen was doing Sofia Vagara's makeup. It is absolutely hilarious - you will laugh so I hard, I promise.....Sofia is such a sport.

Thank you to everyone who has shared my story. It is so exciting to think that my cancer is doing something good. Sorry to talk even more about Ellen, but I can't help it. The other day Keifer Sutherland mentioned red string theory, that people who are destined to meet, are strung together by an invisible red string. It's an old Chinese and Japanese legend. Just listening to Keifer speak, listening to his words, was very inspiring. I instantly went to my DVR to start recording his new show, Touch. I think it's going to be a great find! You should check it out - it seems like positive television, and I love that. I think it's important to surround yourself with love, and happiness. I mean, think about it, why not? Things that make you smile, and warm you from the inside out, help you keep your inner light glow. Not sure if the TV show will do that, but I'm excited to find out.

Today I walk to the retirement community to get my final TB test. After that I should be able to start volunteering! I'm so excited!! I was telling Danny that it's going to be so nice to just enjoy others, and have fun. It's important that I'm not all caught up in my own life, my own story, all the time.

Warning: Graphic

2012-01-22T09:47:00.000-08:00

Well. I did it. I went in for the "little" procedure to remove the rest of my naughty mole that wanted to turn into cancer. I kept my chin up and tried my best to joke with the DR & the assistant, telling them how bummed I am that they're working on my smaller breast. They laughed with me, and kept the mood light. I made it through the numbing (which they warned me would cause my heart rate to increase), it took three shots of numbing stuff, and soon, we were on our way. As soon as they started cutting, I could feel tugging, and snipping. All of a sudden, as I was trying my best to power through, my hands got really sweaty, and a wave of nausea came over me and I knew I was having an aura.

I tried to keep calm, knowing that freaking out makes the seizures come on faster, exactly what you're trying to avoid in that moment. My parents were out in the waiting room with my purse where I keep my pre-seizure pills which efficiently stop the auras from turning into a full blown grand mal. I quickly said, "Guys, can you stop. I'm having an aura, I need water now - cold water - and I have a pre-seizure pill in my purse in the waiting room. I need it. Please go get it. RUN." It was so scary. The assistant ran to the waiting room and grabbed my purse from my mom. In the meantime, the DR soothed me, helping me drink the cool water. When the assistant arrived back in the room, he took out two pills and I placed them under my tongue, waiting for them to dissolve. In the meantime, I practiced deep breathing, and the boys calmed me down by discussing puppies. They were serious heros, so kind.

I made it through the rest of the procedure which lasted about 45 more minutes of cutting, tugging, and then two different strands of stitches, both inside and out. They separated the skin from the tissue and pulled them together, yanking, and that might have been the worst part. That or the cauterizing - one of the places they cauterized I felt a deep burn. Ouch. I honestly had no idea what I was getting into. I thought this was going to be more routine. I've learned that I can not handle awake procedures. Next time I'm going to have to tell the DR that they need to put me asleep or something.

Even yesterday, and this morning, I'm feeling completely nauseous, and ill. I feel very vulnerable for seizures right now. I can't explain it. It's just a feeling that I get. That's why I didn't blog yesterday. I'm trying to take it easy.

It will be one week before I can get my heart rate up, so I guess it'll be easy to keep things light and simple. I'm dying to run through. That always makes me feel better. When I get to the seventh day, I think I'll be like a race horse just bursting through the gates.

I emailed back and forth with a friend recently and she told me to just listen to my heart and that I'll know when it's right for me to start driving. It is painfully obvious that I should not drive for a long time. I shouldn't even think about it. Although we had been clear for the past 5.5 months of little to no auras, this one was very severe. It is a miracle that we were able to stop the seizure. What a relief. I just need to focus on being healthy, exercising, eating right, sleeping well, and worry about things like driving later. I will not put other people in danger just because I want to go to Costco to save on Dave's Bread. Gotta keep things in perspective. I'm just grateful that I can walk to PCC. A few extra bucks to avoid running someone over is quite a deal!

Here's a few photos of my little missing mole. Sorry, it's totally gross, and pretty graphic, but this is a blog to share about my journey. Hope you aren't offended:

I Always Bounce Back

2012-01-20T09:19:00.000-08:00

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?

2012-01-19T20:05:00.000-08:00

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.

Crushing Dreams

2012-01-18T18:32:00.000-08:00

The most frustrating thing about my doctors, is that they are truly waiting for me to die. They don't believe that there's anything that can be done to extend my life (and yet they stiiiiill want to radiate). When we discussed the lack of change in tumor size from October 25th, and January 13th, the doctors said it didn't matter. They care about the big picture. I understand that they're trained to compile the chronological MRI scans to review and observe changes, but when I held the tumor at bay for three months I didn't get a "Woop woop!" Nor did I get a, "Huh. Interesting!" Nothing. They said it didn't matter. Really? I would have appreciated a small smile, or a, "That's great! Not what we typically see here, and you can't extrapolate that to anything one way or another, but heck it's better than the opposite." It's all always so negative. They don't believe in me, they don't believe in us collectively as brain cancer fighters. I've shopped for oncologists, trying to find a better fit, but to no avail. The truth is that according to modern medicine, I'm supposed to continuously get worse as the tumor grows. I'm supposed to progressively lose my speech, my cognitive skills, my independence, my motor skills, my dexterity, my body will start falling apart, echk...everything. I'm supposed to be a good girl, a model patient, and to just give in to whatever my doctors recommend, and succumb to this cancer, and I can see how people do. When you're surrounded by professionals who handle your care, and they don't believe in you, it's hard to believe in yourself.

It is true, the brain tumor did not grow in the time period from October 25 to January 13, the doctors verified that fact today in our appointment. It's amazing how Danny, my parents and I, find this astounding fact to be something to rejoice in, and yet the doctors completely blow it off. It's sad, really. We should be jumping up and down, using this momentum to catapult us to the next phase of our Adios Hermie mission. But somehow, instead, I just feel defeated, and wiped out. I don't cry very often, probably only once every three months, but I can feel a swelling of emotion.

It was a long day of appointments, and there was a lot of information. The main point is that my oncologists, and all of my doctors for that matter, are in the business of crushing dreams. They all expect me to die, it's in their words, and worst of all in their eyes. My dream is to live, and today they just peed on that.

Herman's Lessons

2012-01-18T11:13:00.000-08:00

From the second it rolled off my tongue yesterday, on the video blog, I regretted it. But I was so nervous, and unsure how to edit my video, I just decided to go with it. There's a part in there when I said, "So far, all that I've learned, is that you can never give up, you know, and you have to take everything...lightly, and have fun." That's not all I've learned, though. I've learned much, much more than that.

I've learned that I have a choice, in each moment, in each situation, to interpret things positively or negatively. I've learned that each person you encounter, in any moment, is going through their own challenges. I've learned that a smile from a stranger can spark happiness in your soul, and it's important to give that gift back. From that, I've learned that connecting with others can help heal you. I've learned that you have to be your own advocate, and you need to listen to your inner voice. I've learned about diet and nutrition, and exercise, and meditation. I've learned forgiveness, empathy, gratefulness, kindness, generosity, and true, fulfilling happiness. I thank Herman for continuously teaching me more about myself and how to become a better version of me. You can be whomever you want, but it starts from the inside out. You have a choice to look at things in a positive light. You have the ability to change your negative thoughts. It takes work, but you can do it! Before long you start to notice all of the fun, happy things in your life. Instead of focusing on the bad, scary, unknown things you pick up on things that make you smile. I love that about being an intelligent being. We are so easily moldable.

So there you go. I've learned more than I could ever explain because it's deep inside my soul.

Bingie Looking For Birds
(Apparently, I'm not the only bird lover in the household.
There's a bird feeder in the distance just above his head, hanging on the tree)

My First Video Blog

2012-01-17T14:59:00.000-08:00

At the suggestion of a few friends, I have created my very first video blog! It is ridiculous, but I think I'll get better. This one is just a little introduction...

"Minimal" & "Stable"

2012-01-15T14:50:00.000-08:00

Oh sweet baby kitten, I have great news. We recently received an email from my radiation oncologist, and things are lookin' pretty damn awesome! Let me start from the beginning though...

Friday morning, I had an unusual calmness for an MRI day. I just felt different. I wasn't sure if it was just insane mind control, or a sign of good things to come. Before the MRI started, I asked for an upbeat radio station - they pump music into your headphones to make the experience nicer. I usually choose something slow and relaxing to calm my nerves, but last time I got stuck with a barrage of heart wrenching ballads. It's no good when you're tearing up in the machine. Anyway, this time the young tech picked 106.1 which, according to their website, is a combination of "Top 40 and hits of the 80's and 90's." I literally was busting a mental move, wanting to shake my tail feather. It was AWESOME. They kept playing all the songs I already have on my MP3 player, so I kept flashing back to runs around the lake, visualizing my favorite Green Lake memories. The final song, as they wheeled me out of the machine, and removed my headphones, reminded me of my adopted (not literally, figuratively) little sis, Kristen Linde. It was Brittany Spears, causing me to grin from ear to ear. Priceless.

The MRI took a bit longer than expected, so as soon as I was dressed and found Danny and my parents in the waiting room, we rushed downstairs to the radiation oncology department to meet with my radiation oncologist's nurse.

As they checked me in, they took my vitals and my weight, 144. Then we waited in our room for our RN to give us the results from the MRI. As we waited, we visited and laughed. I was pretty stoked to be weighing in at 144 considering the fact that three months prior I weighed in at 159. Quite the weight change. When our RN came into the room, the first thing she said was, "Wow. You look incredible!" That is music to any one's ears, but especially a cancer patient. It shows that you're doing something right. Anyway, RN said a couple of pleasantries, then asked if we'd like to see the scan. Of course, in unison, we happily replied, "YEAH!" She looked right at me and said, "Well. I'm not going to lie to you, IT'S NOT GOOD! Follow me." My heart sunk to my feet, but I stood and followed. We walked around the corner to the computer screen and watched RN flip through the scans as we asked questions.

RN pulled up the October scan, and the April scan to compare the exact same slides. That way we could see the changes. In comparing the October and January scans, it did look like Herman had grown. It seemed obvious, but later, we realized that the magnification was different! That's a massive error in comparison. As RN continued to say how bad the MRI scan was, and continued to measure Herman with the diagnostic tools, our hearts sank and we felt baffled. It was later, when received an email from my oncologist (forwarded from RN) that we realized that RN doesn't know how to read MRIs very well. PHEW!! We were so scared, so disappointed, and all for nothing! Here is a direct quote from my radiation oncologist:

"There is a nodular region of T2/FLAIR signal
hyperintensity without enhancement along the anterior lateral margin
of the resection cavity measuring approximately 10 mm x 16 mm x 11 mm
on images 602/130 and 603/105 which is similar to minimally increased
in size compared to October 2011 study where it measured
approximately 9 mm x 16 mm x 11 mm. Otherwise the T2/FLAIR signal
hyperintensity surrounding the resection cavity is stable. There are
patchy foci of nonenhancing T2 hyperintensity within the lower
medulla which are similar compared to October 12, 2010 and April 15,
2011 brain MRI which could represent posttreatment changes or less
likely artifact; these findings are not consistently identified on
prior MRIs. No abnormal enhancement. No new mass lesions."

Now, here is where things get REALLY crazy. I pulled up the radiation report from October 25th (the last MRI). In the findings it states, "There has been interval progression of nodular area of T2/FLAIR signal abnormality at the anterior margin of the resection cavity compared to multiple prior examinations dating back to 10/12/2010 that is suspicious for tumor recurrence, measuring 11 mm x 10 mm x 16 mm..." Now, if they're measuring the volume of the tumor, the order of the numbers shouldn't matter, right? And if that is the case, then the numbers match up with Friday's measurements which would mean that the tumor did not grow at all. Anyone have any thoughts on that? I'm confused, but excited and hopeful. The other thing that we noticed, was that Herman is not as bright as he used to be, showing a lack of tumor cell density. Which makes sense because I feel great!

This coming Wednesday I will meet with my radiation oncologist, a new neuro-oncologist, and a specialist that deals with seizure medications. They're still trying to get me to get back on seizure medicine even though I've been seizure free for almost 5.5 months. Sometimes I wonder where common sense, and logic are found in the heads of doctors. No doubt in my mind, they are insanely intelligent, and I need them in my life, but they just can't seem to get out of their train of thought. Just because I've had two seizures, does not mean that I need to be medicated. I am self medicating with nutrition, exercise, sleep, and meditation, and it is obviously working. Why can't they see that? Ugh.

Anyway, I'm so excited to share this news, I hope you find it as hopeful as I did! We are on the right track with this artemisinin and artemether. I'm still going to do the high doses of sulforaphane on my off days with the artemether, just to do a double punch. I'm so excited for the next MRI. What a change!!

Things I've learned from this most recent MRI:

1. Don't just listen to the first person that reads your scan. They may not have enough experience or education to truly diagnose or determine.

2. Keep your chin up, and enjoy each day, even the stressful ones. Life is about how you handle things.

3. If you feel stressed, take a slow deep breath and close your eyes. Picture something that makes you smile. It viscerally changes your mood.

4. If my tumor was genetically based, no amount of dietary change or supplement would effect its growth (PS Astrocytoma tumor cells grow/replicate exponentially). According to this most recent scan, there has been minimal to zero growth. There may even be a change/lessening of density. Therefore, my tumor is environmentally based and can be treated, perhaps eradicated, with diet and supplement changes.

I am so excited about this turn of events! This means that maybe, possibly even someday soon, I can help others eradicate their brain tumors. This is the most non-invasive and promising treatment I've ever heard of. It's cheap, and has little to no side effects. I'M SO EXCITED!!!

Here are two photos from this morning. We awoke to snow in Seattle - a rare occasion. Life is so beautiful!

I see a heart in the tree, and it makes me smile.
Put birds on a heart tree, and that's just pure bliss!

Emma dog & Jess

Damn it.

2012-01-13T15:11:00.000-08:00

Top View Of My Brain

Well shit. Sorry to be the bearer of bad news, but we need to do more. You can see three areas of tumor cells in the lower right hand side of the image. We will have the official report on Wednesday which should compare this MRI with the last MRI, giving measurements. For now, we know because we've seen the compared MRIs for the past several scans, that the tumor area is growing. What we don't exactly know is how fast.

Time for a more serious protocol, perhaps the high dose sulforaphane. We're bummed, but not broken. Time to regroup and try more aggressive tactics.

Today, and tonight, maybe even all weekend, Danny and I will hide. I'll start my high dose artemether tomorrow morning until we can get our first shipment of sulforaphane pills.

It's promising, looking at the scans, that the growth of the tumor appears to have slowed down. Like I said earlier, we'll know more on Wednesday.

Lots of ups and downs, and I'm exhausted. Somehow I feel like I'm just now getting to the meat of this cancer. It's scary. I'd be lying if I said I wasn't afraid. But, I also have a calmness.

Over the past 24 hours as I was stressed, laying in bed with my eyes wide open, or in the MRI trying to be as still as possible, I kept my mantra, "We are all connected. With everything, we can give love." I still had a great day joking with the receptionist, and the MRI technicians. I genuinely smiled and laughed with the IV nurse, even when she couldn't find my vein and dug for ages. Somehow, my pain receptors were more numb than normal, and I was able to live in the moment, realizing that the world doesn't revolve around me, that with each person I came into contact with, has a life, and their own problems.

This cancer is my problem, but lots of people have burdens. I'm just lucky enough to have a rooting section. Another thing I'm grateful for.

Thank you. Thank you for supporting me. I appreciate all of the phone calls, text messages, emails, letters, comments, and all of the prayers. We will beat this. I BELIEVE!!

Photos Of The Day

2012-01-13T08:44:00.000-08:00

Green Lake

Fish That Remind Me Of My Brother Kaal

We're headed out to the hospital, but I needed to upload yesterday's photos. The bottom one reminds me of my brother whom I love so much. He can never make the MRIs since he lives back in Friday Harbor, but he's always with me in spirit.

MRI Eve

2012-01-12T20:48:00.000-08:00

It's the eve of my MRI. Jeez, that went by quickly! I can't help but be nervous and excited. I can't say what we will see tomorrow, but whatever the outcome, I know it will be a great day. Each MRI brings me back to the diagnosis, and the surgeries. I feel lucky to be alive, and grateful for the amazing life I've lived just in the past 21 months. Thank you to everyone who's reading this. Thank you for supporting me, and lifting me up.As far as burdens are concerned, I'm grateful that this is mine to bear. With all of you with me I feel strong and capable.Fingers crossed for health, and our future!

Hot Dogs For Seagulls?

2012-01-11T16:23:00.000-08:00

Man. I did not sleep well. I feel like I was in a car accident. No rest for the weary though, I had errands to run today! Finally, after living in Green Lake for the past few months, I found the perfect place to volunteer. It's an independent living facility (they also do assisted living, and full time care) right on the lake. I had my tour today, which was great, and they pricked me for a tuberculosis test which was no big deal. I should hear back from the coordinator by Sunday to figure out the exact time next week when I'll start. I'm so excited!! It's not a major commitment, just about an hour and a half a week, and I think it's going to be such a wonderful addition to my life.

When I filled out the application they wanted to know if I had any talents, hobbies or interests. Tough one. I wrote, "Talking :) (yes, I literally drew a smiley face), listening, reading, abstract painting, and walking." Thinking back, I'm surprised by the lack of hobbies. I guess I could have added blogging, writing, running, and cooking, but those just didn't pop up in my mind. No big deal though, Donna, the coordinator and I talked and I told her I'd happily do anything - just put me to work!

On the walk home from the living community, I encountered this fine gentleman feeding the birds. I talked to him for a bit, and he handed me a huge jar of seeds to help him out. It was so much fun that I didn't even scold him for feeding the seagulls hot dogs. GROSS! That can't be good for them.

My Bird Buddy

HELLO. Look What I spotted Parked Along Green Lake!

Side note: My favorite part of today was during my tour. I was introduced to so many lovely people, including a gentleman named Jim who was looking dapper, dressed in a beautiful tweed blazer, headed to do group exercise. I think I'm going to learn a thing or two about fashion, grace, and elegance in my near future. This volunteering thing is going to be a blast!

Sniffle...I'm Jessica

2012-01-10T09:51:00.000-08:00

Yesterday was awesome! Until I fell.

So, yesterday, I had another doctor appointment. After looking at a map, I decided that since the office was only three miles away, and my luck with buses hasn't been that great, I would run to my appointment.

Everything was going smoothly, my little MP3 player was all loaded up and plugged in my ears. I also had my new phone with a mapping system to show me the way.

Under I5 - Green Lake

As I was running I kept recognizing the beauty all around Seattle. The weather is so temperate, and gorgeous, even when it's gray. Seattle has the ability to sooth you.

Ravenna Area?

The course taking me to the doctor was through neighborhoods that I've never seen. Such beautiful Tudor style homes, and fun, windy little streets. Quiet little places.

Capturing My Love Affair With Moss

I was minding my business, according to the map on my phone I was less than a few blocks away, when my left leg gave out on me and I collapsed. I hit the ground with my left knee, then my left hip, and my left elbow, while my left shoulder made a crack. My right hand tried to help brace me, but it was practically an afterthought. Worst of all, my new phone that Danny had so graciously gifted me, was shattered.

My adrenalin was through the roof, and I felt completely confused, was I having a seizure?!? I stood up, and leaned against a concrete wall trying to get my vision back on track. Everything looked overexposed, and I couldn't tell if the ground was solid. It was weird. Right then, my phone rang and it was Jessaca - perfect timing. I sort of talk/sobbed and told her what happened, being a mother I think she wanted to come over and bandage me up and give me a cookie or something. Gotta love moms. I would have gladly let her baby me, I was pretty shaken up.

Fallen Soldier

Luckily, although the screen on my new phone is shattered, it still works! Phew. I knew I didn't deserve a super sweet phone, I'm too much of a klutz. I apologized over and over to Danny, but he didn't even care about the phone he was just glad I was okay. I'm still mad at myself though. Stupid feet! No that's not true, I love you feet, but seriously, did you not realize the cargo you were carrying?!?!

I waited at the doctor's office, and when the nurse brought me to the back room for my visit, I hobbled behind her. This was my first appointment with a possible new GP (one that my medical will cover). When he came into the room and said hello, I started crying like a middle schooler that just got teased in the lunch room. Awkward! His eyes got really big and he brought over a tissue and asked what was wrong. I told him, "I had been having problems figuring out the buses....baby sob....so I decided to run to my appointment...second sob...and just a few blocks back...sob again...my left leg gave out...sob...and I fell. I'm sorry....sniffle....I'm Jessica....it's nice to meet you."

No More Fishy Blender

2012-01-09T12:48:00.000-08:00

Oh dear friends, YIKES, the MRI is on Friday!!! Danny and I are trying another fast today, we stopped eating at about 8:00 pm last night, so I'm hoping to make it to 8:00 am tomorrow morning. It's great to get another jump on things. My favorite part of fasting is not having to worry about cooking, or going to the grocery store. It's also handy because my blender is on the fritz. Here's the problems with the blender:

In Order Of Importance:
1. It stinks like old fish oil. GROSS.
2. The blades are mangled so they don't blend things well
3. Even after five minutes, there are solid chunks of bananas
4. The blender sounds like a racing motorcycle, sporadic and uncomfortably high pitched
5. Did I mention the fish smell
5. Did I mention the inability to blend even the softest of items....like a banana?!?

So, after receiving an email from Meghan (my girl friend who is managing Hope For Jess on Etsy), saying that a few more art pieces have sold, I can finally buy us a TurboBlend Vitamix!!! Yay!!!

For those who are not familiar, the Vitamix blenders (there are several types) are so powerful that they can blend whole almonds into almond butter. You can grind whole grains into a powder. These machines are AMAZING! I'm mostly excited to have superb green drinks where I won't have to gag down chunks of broccoli and kale. Kale is very scratchy on the throat, and always triggers my gag reflex. I need to eat 5-7 servings of power packed veggies each day to keep the inflammation down in my body, and green drinks do such a great job of packing the goodies. Thank you to everyone who has bought art, or donated to my account. I truly appreciate it so much!! There is such a relief, knowing that I can pay for certain bills, or purchase necessary things (like a powerful blender - that has a 7 year warranty!).

On a side note, my mom gave me a little bird feeder to place outside our living room window. I've been watching for the past two days and birds have no idea that there's a delicious treat out there. How do I get birds to swing by? Any ideas?

My Lonely Bird Feeder

Gotta Get That Bus App!

2012-01-05T13:52:00.001-08:00

After writing that last post, instead of holing up with a ten pound bag of peanut M&Ms in bed (it helps to keep zero candy in the house) - which is what I wanted to do, I figured it was the perfect time to grab Emma and run the lake. When I'm cranky, or cold for that matter, Green Lake is the perfect mood enhancer.

It's crazy, but when I'm down and frustrated, exercising is literally the last thing I'm interested in, but I know it's the best thing for me. I have never finished a run with a bad attitude. Somewhere between lacing up my tennies, and the final strides slowing to a walk, I am transformed into a happier soul.

Just getting out of the house affords me the luxury of witnessing so many happy things. Yesterday, it was a man combing his two foot beard. Talk about awesome! There was the usual variety of dogs, and of course the lovers walking hand-in-hand. My favorite was the mommy group, spanning the entire path with their strollers like the front line of an army. They were gabbing like crazy and it made me smile. It was gorgeous yesterday, full of sunshine and crisp air.

When I got home, I started calling around to different doctors and finally made an appointment for that afternoon. I hopped in the shower, and wrote down directions. I walked to the bus stop and waited (I always get there early, just in case). When the bus pulled up I was playing on my phone, and quickly jumped up and hopped the steps paying the $2.25 toll. I walked to the back of the bus and got back on my phone. Danny recently gifted me his phone credit at Verizon so that I could get an IPhone. Apparently IPhone has an amazing bus app, which will help me get places. Unfortunately, I haven't downloaded it yet, because ten minutes into my ride I realized that I had gotten on the WRONG BUS!

I hopped off the bus, and knew where I was, but it was definitely waaaaaay off my path. So, I started walking, and called my mother. This is what always happens when I take the bus, I end up having to call someone who's at a computer to help me navigate my journey. I walked about thirty city blocks before my mom and I decided I needed to snag a taxi to make it to my doctor's appointment in time.

What I learned: Pay attention to the bus you're getting on. It will save you a lot of time, and money.

Luckily my doctor was running a little late and I had time to relax before the nurse took my blood pressure. She laughed hysterically when I gave her the full story and insisted that everyone has taken the wrong bus at least once in their early bus riding career. Aaaaah, just another day in the life of a new city girl.

Second moral of the story: Don't give up! I was able to make a doctor's appointment the same day, within my network of providers. I have a second appointment on Monday where I'll deal with the pooh issues. These two doctors are linked to UW so they can see all of my medical history and that's helpful too. During my annual exam (I figured I might as well start with that in my introductory appointment), the doctor asked how I was doing with the cancer. That was weird, but nice. She was supportive, and smiled. I told her that I'm trying to be as healthy as I can, and that I opted out of radiation at this point. She said with a smile, "I saw that." I wonder what the notes in my file say! Yikes! "Uncooperative little cuss" maybe? Anyway, my new doctor seemed to be on board, and thought that I have a healthy, happy attitude. Nice compliment!

I told her that I'm going to bring my body back to great health, rid myself of cancer, and that she'll see me someday when I ask her to remove my copper IUD. That someday, she will watch Danny and I start a family. Since the surgeries, Danny and I have cried several times over the thought of not being able to have a family together. I don't like to discuss it much with friends, or family, or on the blog. It's just such a deep and emotional issue, and along with that there are fears. I haven't always believed that I would get better. I wanted it, but I didn't truly believe. Now I do. I think that I just need to find the correct concoction of treatments.

I am sad to say that it used to be too painful to be close with my friends who were pregnant, or with new babies, but I'm happy to say that now I'm just ecstatic over the miracle of life. I love watching my friends start their families! I've come to peace, and my ugly jealousy and pain have disappeared. That's a very important and powerful change!

Pause The X-Ray

2012-01-05T10:02:00.000-08:00

Ugh....why is our health care so confusing?!?! Why is it that they'll pay for THAT but not THIS, and sometimes they'll cover 80% and other times nothing. On a whim, I called my insurance company to make sure that I didn't need a pre-authorization, and I asked what they would cover. Answer: I would have to pay the first $500, and then 20% after that. Yuck! Seriously? How much IS an abdominal x-ray?

There is a whole world of medical nuances and it can seriously make you go blind. I've been fortunate enough to have my mother match up all of my statements, and bills and argue discrepancies. She's saved me a lot of money because of coding errors and double billing. I think it's sad that it's this hard to figure out your own health care. We have amazing doctors, amazing treatments, and I love the health care available, it's just so damn expensive. Think of if I didn't even HAVE insurance. That thought makes me ill.

I recently was able to get on to Danny's work insurance, so now, instead of just stacking another $500 & 20% bill onto the stack, I've already been on the internet trying to find a new doctor on my new insurance plan that will hopefully be a good fit and maybe won't be quite as expensive. So far I've got nothing. Most of the general practitioners that I could walk to (closest is over a mile) specialize in physical therapy, or they have a small private office and they don't have access to the other therapies that I was hoping to utilize. This whole no driving thing is really becoming a pain in my ass.

It has been five months, exactly, since my last seizure. In one more month I can drive. I've talked about it a bunch with Danny, and a couple of my friends, that I'm scared. I don't know if I can put myself behind a wheel. I would never forgive myself if I hurt someone. Dan and I have a friend who was hit by a car while riding her bike. If I was driving, and a seizure came on, I might not be able to stop the car in time. What if I hit a pedestrian? What if I hit a child? What if? What if? It's a very sobering thought. I don't know how I will reconcile that fear. I'm not sure if I should ever drive again.

Ugh. In the meantime, I need to find a new doctor and see if Dan's plan covers x-rays. I hate this. I just want to crawl back in bed and give up.

Abdomen X-Ray

2012-01-04T13:22:00.000-08:00

Another Rainy Day In The Hood!

Kisses For Jess

I tried to take a photo of both Emma and I smiling, but she kept trying to kiss me. That was the final shot of about 13. Kisses for Jess because she took Emma to the Green Lake library to renew Dan's book. Dogs are so easy to please.

The fast lasted until about six o'clock last night, a total of 24 hours, until my stomach started cramping so badly that I couldn't function. I had to eat something which, in our limited resources, consisted of raw broccoli and my homemade spinach and jalapeno humus (note to self: horrible combination on an empty stomach). I haven't been mentioning it on the blog (because I feel like it's TMI - for those out of the loop, that means too much information), but I've been dealing with a digestive problem for the past couple of months. It has gotten progressively worse so my doctor scheduled an x-ray for tomorrow.

Originally, my doctor was concerned about a lump in my lower left side, but she wanted to make sure that it wasn't just a hard bowel (GROSS). This digestive problem is my own fault, I've been a phantom pooper (thanks for the term Jessaca!) for years, which is very bad for your digestive system and your whole body. It has come to the point where girl friends joke that they're going to get me the book, Everyone Poops (it's for children). Anyway, to make a long story even longer, Dr P, my general practitioner didn't like the lump and put me on some sort of laxative for a week, telling me that if I didn't pooh every day she wanted to take a lower abdomen x-ray.

Well friends, that day has come and tomorrow we will find out what's going on. Dr P's biggest concern is that my diet is so full of vegetables, fruits, lentils, brown rice, etc. that I should be pooh-ing once, maybe even twice a day. Yikes. That seems like a lot, and is definitely not even close to my regular routine.

I'm nervous about the x-ray. As you all know, I despise radiation, but I need to know what's happening in my body. I want to have a healthy, functioning, happy system, and for some reason, things aren't working the way that they should be.

As always, I'll keep you posted. Unless it's just horrifically gross, in which case I might omit some details.

Hungry Girl

2012-01-03T12:19:00.000-08:00

Good Morning World! I just walked into the kitchen, and passed by the flowers Dan sent me on our anniversary on the 20th. I've trimmed down the bunch and pulled out the fallen soldiers, and still, this little bunch powers through. These precious flowers have lasted 15 days. That seems like some sort of miracle, and each day, several times, I smile.

So, last night, Danny and I, after dinner decided that we're going to start a 36 hour fast. We figured it would be a great way to jump start the final days before the MRI. I have to tell on myself, we definitely ate some fun foods this past weekend, and drank some fun drinks. But, now we're back on track and working for ketosis. The fast was recommended by a friend through the blog, and we figured, "Why not!?" I hope Danny's functioning at work okay. I feel like it's harder for him to skip meals than it is for me. I'm hungry though, and that should be a sign that Dan's body must think he's dying :)

Each morning, when I wake up, I turn on my phone and there is always a text from Dan. It can be something as simple as XOXOXO. Today, this is what it said, "Morning sweetness!!! Have a good day. I hope you don't get too hungry today :). My stomach is nervous, "Where's my morning snack?", "What's going on here?" I hope Danny doesn't mind that I shared his text (outing the world to his soft side), but I just thought it was so funny! What a great man that he optioned to join me on my fast. He's such a wonderful partner in crime!

I have to admit, I'm relieved to not have to plan for dinner. We are scarily low on veggies, I think we have a head of broccoli and that's it. Well, that and some garlic. Maybe I'll walk over to PCC and stock up, but I'm nervous. We all know what happens when a hungry girl goes to the grocery store.

That reminds me, if any of you have recipes that follow the following guidelines, I always love suggestions!

Restrictions:

No dairy

No meat

No salt

No flour

No sugar (not even natural sweeteners, only fruit is allowed)

No white potatoes

.....I hope I'm remembering all the do-not-eat foods.

Points For (in no particular order):

Mushrooms (double points for maitake & shiitake)

Onions

Shallots

Garlic

Broccoli

Cauliflower

Bok choy

Watercress

Kale

Spinach

Thanks for the help!

Happy New Year

2011-12-31T14:21:00.000-08:00

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!!

Adorable Firecracker, Little Ty

2011-12-30T13:25:00.000-08:00

I have a very special family that I want to share with you. Their son, Tyler is such a joy, and right now he's about to embark on a very long phase of his life which includes lots of surgeries, and tons of hospital visits. Tyler's first surgery is on January 4th, and you can hear all about him, and his family on their blog. Please send them your prayers, or positive energy, or whatever it is that you do. They are such wonderful people, they truly deserve it!

Tyler's mother is a very dear Wenatchee friend who has been close to my heart for the past eight, almost nine years. She is a true kind soul. I remember when Sarah found out, while she was pregnant, that Tyler has congenital scoliosis. The doctor wanted to know if she would like information and the location for an abortion. Sarah was shocked. She was already so in love with her son, that letting him go was absolutely out of the option. Tyler is her first child, and from before she was even pregnant, we all knew she would be an unbelievable mother.

Please support her on her journey. Here is the link for the blog of her son:
http://www.tyburnell.blogspot.com/

I hope Sarah doesn't mind, but I took a photo from her facebook. It was just too cute not to share :)

We're Going To Beat This!!

2011-12-29T16:02:00.000-08:00

Things I learned while running the lake today:

A three legged dog is just as happy running as a four legged dog
Unicycles are a surprising efficient mode of transportation
Squirrels love playing tag
Ducks are equally adorable sleeping or awake

I've been so excited about this upcoming MRI that I can't stop myself, I've ran the lake three days in a row. I'm not fast, it takes about 45 minutes, but who cares, it's a lot of fun!

I feel so wonderful, full of energy, refreshed, alive, I just feel like pinching myself. This is such a change from the weeks before the last MRI. Even if the results from this scan are poor, I'm not worried. I'm under the opinion that if I feel wonderful, that's 80% of my life. The other 20% which is the cancer is just that. Just cancer. I still have a "B" in life. That's incredible!

Although I am, still, a little nervous, I'm mostly excited, and I'm not really afraid. I'm a bit afraid (how could you not be), but mostly I'm just happy. I'm happy to have so much energy, and to have such a wonderful life.

As I ran yesterday, nearing the end of my loop, all I could think about was the little things in my life that make everything so great. I am the most grateful I've ever been, and I honestly didn't think I could get more grateful. It's what I think about all the time. I'm grateful that I have Danny, that I live in Green Lake, I'm grateful for my health, I'm grateful for my family, I'm grateful for my friends, I'm grateful for the artemisinin, I'm grateful for PCC and all of its healthy produce, I'm grateful for our home, I'm grateful for our pets, I'm grateful for squirrels, and I'm grateful for moss because it's so pretty (I could go on, but I'm afraid it'll be annoying).

This morning, as I was sprinting out my run, in the very last steps I thought to myself, "We're going to beat this!!"

That First Mile

2011-12-28T18:37:00.000-08:00

I have an embarrassing story. In fact, I may have mentioned it before, but I'm going to tell it again.

I just finished jogging around Green Lake, and although when I started it was misting, while I was halfway around the lake it started dumping rain. Rain drops were cascading down my face, down my neck, I was soaking wet. When I first moved to Seattle I was worried about the weather, I was afraid I would hate the rain. Now that I've lived here for three months, I can safely say that the rain is soothing. I love it. Even when I run, the drops have a way of cleansing you from the outside in.

Rain Outside Our Living Room Window

As I ran, and the rain continued to pour, I thought about how different my life has become. I flashed back to 2006 when I was stifled in a poorly mated marriage. I stopped running for a period of time, a few years, and I didn't focus much on the food I was eating - I ate all kinds of crap, anything that sounded delicious. That year, I topped off at a yearly doctor's exam at 183 lbs. I am 5'6 and 3/4" (I always have to add that almost inch). That doctor's appointment was a changing moment for me. I decided that I was being stupid, that just because my husband wasn't in love with me, didn't mean I couldn't love myself. So, I started jogging. At first, I could only go about a block. My lungs would burn, and I'd be wheezing up a storm. I hated the fact that when I ran I could feel all of the extra fat on my body bounce, and I was frustrated that I didn't fit in any comfortable workout clothes. I was disgusted with myself. I was in a love/hate relationship with my own body, and struggling with my self worth.

Once I was able to jog one mile, I decided to set a goal. A big goal. I signed up for a half marathon. I didn't care how long it took me to do finish, my only stipulation was that I was not going to walk - no matter what. It took about half a year to train for the 13.1 miles, but I did it. During the race, in the final couple of miles, as I trudged through, I was neck-in-neck with two speed walkers, it was hilarious!

Finishing that race was one of the most challenging and surprising things I've ever accomplished. It showed me that I'm capable if I put my mind to it. It was not easy, that's for sure. Some days I didn't want to run, but I didn't want to give up. By the finish of the race, after all the months of training, I was down to around 150 lbs. I was healthier, and I promised myself that I would never give up on myself like that again.

Crazy memory, huh. It nice to have ups and downs in life. The downs are truly what makes you strive to improve and appreciate things.

Is That A Mojito!?

2011-12-23T11:08:00.000-08:00

I just stole this from my friend, Sara's blog. It's just so funny I couldn't help it. Sorry Sara, and Merry Christmas! XOXO :) Please enjoy, this must be seen.

90-95% Of Cancer Rooted In Lifestyle/Environment

2011-12-23T09:51:00.000-08:00

Almost Merry Christmas! Kind of, I'm two days early. It feels like Christmas (even though we don't have a tree). It's a combination of the smells outside (it's sooooo cold), and the lack of traffic outside our living room window. This is the first Christmas that Danny and I have had, just the two of us. I'm excited! It's not going to be the homemade cinnamon rolls that my mom always makes, but a green drink in pajamas will still be fun.

I finished the 4-4-4 last night and I'm so grateful. It was starting to make my stomach upset and the right side of my body was tingly. The tingles are good, that means it's working. My digestive system is still a little bit off, so I went for comfort food this morning. My old favorite toast with Dave's Good Seed Sprouted Bread, an egg (free range of course with no gross hormones in the chicken or its food) doused in tumeric, with a massive clove of garlic chopped on top. It is the first time I've had an egg in two months.

The toast still isn't sitting well, but I'm sure it'll even itself out. I'm going to wash it down with some broccoli tea and see what happens.

On a different note, thank you to everyone who donated to Matt's Movember quest. Thank you to those who've donated to the Islander's Bank account in Friday Harbor. Thank you for those of you who have already bought from the hopeforjess site on Etsy. Danny and I have been talking, constantly, about how fortunate we are. The money that you've donated has given us such a relief. We are still getting medical bills from 2010. Isn't that crazy?!?!? My goal is to continue to get healthier and healthier, treating my body with respect and kindness. I'm excited for this MRI because I believe my brain will look better than it did in October.

I believe I can beat this, and my confidence isn't based in hope alone, it's research backed. Dan and I were recently sent a thread from a cancer post, which included several research studies. Below is an excerpt which I found encouraging (to read the full post and access the research studies please click here):

Cancer is a Preventable Disease that Requires Major Lifestyle Changes
Abstract. This year, more than 1 million Americans and more than 10 million people worldwide are expected to be diagnosed with cancer, a disease commonly believed to be preventable. Only 5-10% of all cancer cases can be attributed to genetic defects, whereas the remaining 90-95% have their roots in the environment and lifestyle. The lifestyle factors include cigarette smoking, diet (fried foods, red meat), alcohol, sun exposure, environmental pollutants, infections, stress, obesity, and physical inactivity. The evidence indicates that of all cancer-related deaths, almost 25-30% are due to tobacco, as many as 30-35% are linked to diet, about 15-20% are due to infections, and the remaining percentage are due to other factors like radiation, stress, physical inactivity, environmental pollutants etc. Therefore, cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. In this review we present evidence that inflammation is the link between the agents/factors that cause cancer and the agents that prevent it. In addition, we provide evidence that cancer is a preventable disease that requires major lifestyle changes. A more detailed discussion of dietary agents that can block inflammation and thereby provide chemopreventative effects is presented in the following section. Most carcinogens that are ingested, such as nitrates, nitrosamines, pesticides, and dioxins, come from food or food additives or from cooking.

If 90-95% of cancers are rooted in environment and lifestyle, shouldn't we be able to reverse most them? I still believe that my cell phone was to blame for my brain tumor. I think it was the radiation. Lots of people think I'm misguided, but I don't care. They don't do the research, and most people don't know to check WHO is doing the research. Most of the studies stating that cell phones are safe have been funded either directly or indirectly by the major companies that profit from them. Anyway, enough of my rant. Back to the cancer.

My body isn't going to right itself, I need to build up the Natural Killer cells, they're the little warriors of your immune system that go out and clean up tumor cells and viruses. It's been proven in studies that people with cancer have a depleted amount of NK cells. So, just by eating "clean" food will not, alone, fix my problem. This cancer is a whole body disease, it can not be eradicated with food alone. I need to build up my immune system, and cultivate my NK cells. With supplements you can increase your NK cells, and often after a period of supplementation, your body starts to create more on its own. I just need to train my body, and give it a jump start of sorts. Anyway, I think I'm getting to technical in all of this - sorry. I tend to get really excited about this stuff.

I want so badly to fix this cancer and help others. I don't mind doing the leg work. It would be my ultimate dream to get to the point where there is no detectable cancer in my body and then help others achieve the same outcome. That would be the ultimate. I can not imagine how wonderful that would feel, to replicate the success. But, first things first, I have to start with me.

Final High Dose Day (First Round)

2011-12-22T14:45:00.000-08:00

I got a little nervous yesterday morning, fearful of a seizure, so I started with a 3-3-3 (butyrate, artemether, and piperine) instead of the 4-4-4. I took the pills at around 9:45 am and then I grabbed the necessities, a tall glass of water, the cordless telephone (in case of emergency), pre-seizure pill (just to be safe), several books, Emma and Mr Bingie for cuddling. The morning was quite uneventful, though. I quarantined myself in bed until 12:30 pm when I was starving and had to head down for some breakfast.

Since the side effects were nil, I decided last night to do 4-4-4. No effect, and this morning I took another 4-4-4. Tonight is the last pill set, and from then on I'm just going to focus on my diet, and exercise. I need to read up on anti-inflammatory foods. My biggest focus is on reducing inflammation so that the MRI scan shows as clearly as possible.

I'm excited about this MRI but, of course, I'm a bit nervous. My body feels wonderful, I have more energy than I've had in ages, my skin is clear, I've lost around 18 lbs (I had packed on some weight after the seizures). When I originally checked in for brain surgery in April of 2010, I weighed 151. I now weigh 141. The great part is that I still have fat on my body. I honestly didn't know that I had THAT much body fat. It has been pretty eye opening. I still wear the same clothing size, but everything fits better. That's nice. You'd think that the fat-loss of this diet would be the best part, but it's not. The most exciting part of these past several weeks has been the way that I feel. I am healthy and alive. It's miraculous.

On a side note, I had a crazy dream last night. I have a habit of having those. I dreamt that I was in a remote area down around the Mississippi sound, somewhere in south Louisiana. I was in a house on a hill, overlooking lush green trees and the beautiful water. Danny was working on an oil rig in the bay, which I could see from the living room window. On my hip was my friend Jenny's three and half year old daughter. All of a sudden, from the south east I noticed a funnel cloud over the water. I remember saying, "Look Bailey, see that funnel cloud?" I glanced over my shoulder, and when I looked back there were three, one headed directly for our house. I ran to the next room and ushered her into the bathtub with my mother. With nowhere else to hide, I returned to the living room and scrambled under a table, taking a deep breath. I was aware the tornado/hurricane, would be crashing down immediately. I took another deep breath and closed my eyes as I heard the crashing of glass all around me. I felt my body levitate in air and I sensed that I had been caught up in the whirlwind. My biggest concern was the impalement of some sort of foreign object, but I understood it was out of my hands. I didn't panic, I just hoped that everyone in my life knew that I love them all dearly. I remember the whooshing of the wind, and the centripetal force. I hoped I would survive, but I knew I had to acquiesce to the forces around me. The next thing I realized, I was waking up surrounded by debris. The sky above was a crisp blue, and I was completely uninjured. I dug around to find my mother, Bailey, and my father, and they were all unharmed. I hopped in a car (my college car, Buttercup, a 1979 diesel which I've long since sold) to head down to the waterfront to find Danny. As I was driving, people were walking, looking for people, some were crying, others were in shock. Then I woke up.

More "Hope"

2011-12-20T13:12:00.000-08:00

The first day of 2-2-2 twice daily went great yesterday. I was dizzy and felt a little bit disconnected to my limbs, but that's no big thing. I was able to avoid eating until noon, at which point I made a homemade humus bok choy sandwich, and ate an apple. The most noticeable side affect came at 11:01 am (I'm taking copious notes). I had a sharp pain in my head, then I had a rushed taste of metal in my mouth. Within seconds it was gone. I'm hoping that it was a massive explosion of cancer cells, that all of the iron spontaneously combusted, and now my body is flushing out the debris. A girl can dream can't she?!? :)

It's nerve wracking to put myself out there with this new treatment. I kept worrying last night, what if it's a bust? But then, while we were laying in bed, I asked Danny to give me his mental illustration of the artemether as it gets digested. Of course he leant to a military analogy. He kept saying things like, "The artemether soldiers are marching through your intestines." And I asked, "Are they singing a marching song like the do in the movies?!?" It was fun to take the stress out of the situation. I'm lucky to have a man that will play along.

Today I have a break from the artemether, piperine and butyrate. Tomorrow, though, we double the dosage and take the pills twice. Instead of the 2-2-2 twice daily, it will be 4-4-4 twice daily. I'm excited and nervous at the same time. I keep telling myself, "Why not believe that I can beat this. Why not believe that the artemether will work. Why not believe that I can change my destiny. Maybe ridding myself of this cancer IS my destiny!"

I want this protocol to work so badly, not just for me, but for all of my friends that I've met that also have brain cancer. I am in the perfect position to try new things. I have a supportive husband that never ceases to amaze me. I have a great family that helps me stay on track that researches all of the alternatives. I have friends that walk hand in hand with me, that keep me laughing, and smother me in hugs. I don't have the responsibility of children. I have the drive to stay on course. I want this to work so that I can be a guinea pig to help others change their destiny too. There is no reason why we can't beat this. Doctors don't even really know what causes brain cancer. They believe it could be a wide variety of things. If there are a wide variety of causes, then it's fair to reason that there could multiple cures. We just have to figure them out! And, if this artemether doesn't work, then that doesn't mean that other things won't.

Here's a fun photo from last night's dinner.
It looks pretty boring, but it was surprising filling.
Shown: Homemade spinach and jalapeno humus, raw broccoli (for dipping), and an everything but the kitchen sink salad (purple kale, arugala, spinach, green onions, garlic, tomato, avocado, fresh cracked pepper, squeezed lime, & extra virgin olive oil)

Danny is such a sport. Often nights, dinner is a simple meal. Last night might have been the most simple meal in a long time. I think, maybe, I was trying to make up for the naughty martinis from Saturday night. Like I've always said, I have to be just a little bit bad or I get stir crazy. The little gremlin in me needs to be fed, then I can go on with strength and determination.

On another note, I have an amazing story of friendship and love. I have no idea how my life has been so magical. I am the luckiest girl. I have been surrounded with literally, living angles. Do you remember the piece of art that I made for my friend Meghan's philanthropy? It was called, "Hope." Anyway, last night, Meghan stopped by with a huge package, she had called earlier, asking for help. When she arrived, she started cutting open the package, and I just assumed she needed a bunch of cutting done for someone's Christmas present or something. Nope. She needed me to sign a few things....

Meghan bought my piece of art at the WPIG Pigture Perfect Art Auction so that she would have the rights. She then came up with the idea to contact a bunch of my girlfriends (shown below in the row boat), to chip in to start a site on Etsy.com to fundraise. It's called Hope For Jess and it's prints of my piece of art. How cool is that!?!

The girls paid for all of the prints (there are regular prints and canvas prints). Megs said that the prices are a bit dear, but that's okay. If they don't sell, maybe they can put them on sale :)

Girls Weekend 2011
Top: Libbey, Lauren, Kristin, Jenny, Michelle, Laura
Bottom: Jessaca, Meghan, Julia, Me
Not Shown: Jessica (Abu Dhabi) & Courtney

I am still, so blown away. This is exactly why I should be doing this protocol, and whatever protocol may come my way in the future until we figure this out. It is imperative that someone like me work as a guinea pig so that others that don't have the energy or time, or resources, can get well. I constantly feel love and support, and I am just so grateful for all of the friendship and generosity. I feel like we're all working together as some sort of badass team, working for the greater good. Maybe that's a lofty attitude, but it's just how I feel.

On a final note, I am happy to share that three years ago to the day, Danny and I had our first date. It was the most magical night of my life. At one point, he insisted that he carry me like we were going over a threshold, all because it was snowing and I was wearing heels. It was perfect in every way, and it makes me cry with big fat tears of joy that we came together. He makes me happy from morning to night. Even when we're cranky there's always laughter. If you've never met him, I'm sure you can tell how amazing he is from the stories on the blog. He has never wavered in his support or love. He found me sexy even while bald with 52 bloody staples across my head. He shuttled me on two hour drives in each direction to doctor appointments, to rehabilitation appointments, his dedication never wavered. When we didn't know if I'd read again, or get back to running and living my life, when I could only use one syllable words, and we didn't know if I would ever have enough energy to truly LIVE, he was happy just cuddling on the couch, or resting silently. I know that he is my soulmate, that I am the best person I can be because he supports all that is good. A partner like Danny is a miracle to come by, and I think about that every day. When I'm stressed, I just picture his face and it soothes me. He is a main reason why I have the will and desire to strive for perfect health. I know it will be an ongoing journey for the rest of my life, but with Danny by my side I know I can do it! Cheers to Danny, my love.

Pursue New Understandings

2011-12-19T10:18:00.000-08:00

This weekend, Danny and I first stopped at my parent's house for a slumber party (when leaving, my mom loaded us with two of every vegetable available in the organic section from her supermarket - gotta love moms!), then headed to an Elves getaway over in Chelan at a friend's lake house. It was so much fun goofing around, listening to music, relaxing in the hot tub, and laughing with friends. Since I was off the artemix, I even enjoyed a couple of martinis. Friends and family truly are the best medicine.

Coming Up Over Navarre Coulee

Now, I'm back at home and I've just finished the first dosing of my artemether (9:15am). Calculating it by weight (thanks Dad & friend), I am starting with two pills of the following: artemether (40mg ea), butyrate, and piperine. I take it on an empty stomach. Then, I refrain from eating for a few hours (two or three, as long as I can manage). During the day I eat normally, but I need to stop by 4:30pm so that I can take my second dose (same quantities) on an empty stomach at 9:15pm.

I'm excited and nervous to see what happens. Today I'm starting with the 2-2-2 twice a day, and tomorrow I'll do nothing, making sure that there aren't any odd side effects. Assuming everything's okay, on Wednesday I'll start 4-4-4 twice a day.

When I first started taking the artemix, back a few months ago, I remember getting very tired and periodically dizzy. I'm already feeling the dizziness. It's probably a good time to go lay down and see if I can read or just rest my eyes. I think this week is going to be pretty subdued while I do this extra dosing. I'm only going to do this protocol for one week, then, after that I'm going to work on building my immune system. I need to clean up any cancer cell die-off that is occurring so that it doesn't skew the results of the MRI.

On another note, I've been thinking a bunch about what it means to be happy, and I read this:

"Genuinely happy people do not just sit around being content. They make things happen. They pursue new understandings, seek new achievements, and control their thoughts and feelings. They also learn from others." What a great quote.

Off The Artemix

2011-12-16T13:35:00.000-08:00

Photo Of The Day: Sleepy Kitty - Mr. Bingie Butterbutt

I stopped taking the artemisinin last night. Phew, that's going to make life easier. It has been serious dedication to stop eating at 4:30 pm each night. There are still a few pills left in the bottle, but we stopped because there were a few signs that perhaps my liver and kidneys were getting tired. I won't get into the details - nothing scary, just a little too much information. For the next few days I'm going to try and flush my system with more of my vegan diet (especially my green smoothies), and lots of water. In a couple more days, when I feel like my body is ready, I'm going to start the high dosage of artemether. Our goal is to do a 1-2 punch on the cancer cells and see what happens. I should only be on the high dosages for 3-5 days, we're going to feel it out. After that it's smooth sailing until the MRI on January 13th.

I'm excited and nervous about the transition. I'm hopeful and excited, but at the same time, sometimes I worry that I haven't done enough. The artemisinin is shockingly non-invasive, and easy to consume, I wonder if it's even working. I try not to think negatively about this treatment, but I'm human. Things just pop in my head from time to time. I'm excited to get the results and find out. Patience is incredibly important, and yet so hard to come by. It probably doesn't help that I read Tug McGraw's book recently, which in its final chapter detailed his death from a glioblastoma which is what my brain tumor progresses into (eventually). Big mistake. I don't think I needed to know all the heartbreaking details. I've been looking to books and videos to uplift me and give me strength. The problem is that some books are just flat out sad. It's tricky stuff.

At least, if this protocol doesn't show up as effective, I still have more tricks up my sleeve. That, my friends, is what I'm so grateful for today. There are always more ways around the same problem! I'm also grateful that I only have the diffuse astrocytoma and not the glioblastoma. I'm so grateful for that!!

I Heart Ellen

2011-12-15T11:31:00.000-08:00

Yesterday I had an epiphany...I realized that I want to share my story with whomever will listen. I know it sounds crazy, but it hadn't occurred to me in such simple terms. I want to inspire people. I want to connect with others, come together and encourage people. So here's what I did, I decided that I'm going to try and get on the Ellen show! I sent an email to a few friends (I didn't want to overwhelm everyone on my contact list), and I've pasted it below.

Hi Ladies,

I need your help. Somehow it popped into my crazy brain that I neeeeeed to get on the Ellen show. She's so positive and fun, hilarious and kind. I want to share my brain cancer story, and inspire others to overcome challenges, band together with friends, find ways around walls, use nutrition, exercise and anything you can when faced with a medical challenge. And above all, have fun with life. I want to meet Ellen so badly, if I could just get on her show for five minutes I think I could inspire others to believe that they're worth the effort, and that each day, a hundred times, we make choices. Choose to follow your dreams. My dream is to be healthy and live a long life, and I refuse to give up.

Please use the link below to help encourage the producers to put me on their show:

http://ellen.warnerbros.com/show/respond/?PlugID=10

According to the World Health Organization, a person with my diagnosis has on average 4 years to live. I refuse to accept that. Help me earn a spot on Ellen and inspire others to look fear in the face and march forward.

Please mention my blog, jessicaoldwyn.blogspot.com. Also, you can include a photo in your message, so I've attached one of my favorites if you want to use it. If you have a different one that you'd prefer, of course you're welcome to do that too.

Thanks for your help! I really appreciate it!

Jess

PS. Please feel free to forward this email on. I have no shame (ok, a little) in asking for help.

If you're interested in helping me with this venture, please contact the Ellen show through this link:

http://ellen.warnerbros.com/show/respond/?PlugID=10

I'm so excited about this! Just putting my dream into action through the email, and now this post, is making me giddy!

Why not believe that we can make a difference? Why not believe that my story is worth hearing? Why not believe that through love, anything can happen? I believe that someone, somewhere out there, needs to hear that they can master their destiny. That they can alter their fate, even when the cards are stacked against them. Sometimes, all we need is a little encouragement. I know that when I'm down in the dumps, all it takes is a little kindness, a little inspiration, or a little belief from someone else that I can beat this! There are others that need to hear that message.

Stockholm Syndrome?

2011-12-14T12:30:00.000-08:00

I've been thinking a lot lately about this brain tumor journey that I've been on. It's crazy. What a huge diagnosis. It has completely evolved who I am.

For the longest time I've looked at this brain tumor/cancer as a fight, that I'm at war with this little growing nugget in my brain. But the truth is that Herman (my tumor) has taught me invaluable lessons. I've learned more about kindness, about love, generosity, grace, perseverance, tenacity, curiosity, patience, true happiness, and so much more. Instead of fighting Herman, I'm confused because I'm so grateful. It's such a dichotomy. I have so much love in my heart that I've been able to go through this and learn so much, and at the same time I'm at odds with the fact that the same thing that I appreciate so much is supposed to be my demise. It's confusing.

I was okay, as a person, before the brain tumor, but now I can say that I'm truly proud of who I am. I hope it's okay to say that I'm proud of myself - that it's not cocky or weird. It's just that sometimes, in my past, I haven't always been the nicest person, or the most kind, generous, or patient. I'm embarrassed to say that I went through a decent phase of superficiality while I was in college.

Anyway, I'm curious. I'm curious about how this is all going to play out. I feel more at ease with this cancer than I have ever been. But, I wonder, if I am okay with this brain cancer, is that giving up? I don't feel like I'm giving up. I'm still exercising, focusing on my strict diet, laughing, and living my life, but at the same time, if I'm not "fighting", am I accepting? And, is accepting bad?

I can't quite put my finger on this one. Is this healthy or do I have Stockholm Syndrome? I don't even know how to answer this question.

I am Healthy and Strong

2011-12-13T14:28:00.000-08:00

It took me a bit, but I finally hooked my camera to the computer. Here are a few fun photos from the WPIG Pigture Perfect fundraising event a month ago.....

Great Minds Think Alike

Mom & Dad

My Thoughtful Hilarious Beautiful Seattle Girls

I have such a wonderful life. I can't even believe it. This past weekend, Danny and I hid from the world. We watched old episodes of Sons Of Anarchy (sometimes I have to close my eyes). We walked around Green Lake. We laughed. We went and checked out the luminaries down by the water - it was beautiful even though I have no idea what it symbolized.

I am so grateful to be alive! I still get doubt and fear. It pops up just for a second here or there throughout the day, but I've started combatting it. Each time I fret, and worry about this cancer, I take a deep breath and I say, "I am healthy and strong." And it's true! I am healthy, and I am strong. I will not live in fear of this cancer. Instead of fearing this coming MRI (next month to the day), I am going to use my logic. I have not had a seizure in over four months. I can walk around Green Lake, even if I can't always run it. I have started lifting weights three nights a week. I am capable. I feel great. I am healthy. I am strong. Most of all, I'm happy.

Luminaries Around Green Lake

Moan & Gripe With Me

2011-12-07T11:58:00.001-08:00

Last night, while I was in the shower, I started thinking about how goofy I am. Instead of being excited about the jog halfway around the lake, and concurrent walk the rest of the way home, I was disappointed in myself. What the hell? How backward is that. Instantly, I started laughing to myself and changed my thinking. Exercise is exercise. I flashed back to the days I was in the ICU. I remembered the paralysis on my right side. I remember not being able to walk more than a few steps without being winded and exhausted. I remember months of slowly training to start jogging again, and eventually, my first 10k. I have everything to be grateful about. I might get tired, and yes, that's disappointing, but I'm still here. I'm still nourishing my body with nutrients, sleep, exercise, meditation, and cognitive challenges like reading. My mind and body may be tired from time to time, but they are also the most healthy they've ever been. Sometimes, more doesn't mean better. I don't have to run five miles to get the same results. I just need to do quality exercise, breathe deeply, use it to rejuvenate my mind, and be grateful for the opportunity to work my body. There was a time when nurses told me I might never jog again. I have happily proved them wrong. When I'm down or frustrated, I have to remind myself that, if there's a down side, there's always an up side. I already feel better. Still tired, but much happier! And that's what it's all about :)

Last night Danny got a kick out of my study session. I've been reading the book, Cancer: 50 Essential Things To Do, by Greg Anderson and taking notes. I'm researching the way to navigate through this diagnosis, and learn from survivors. I figure, those who have fought the cancer fight, have learned things about attitude, nutrition, spiritual well being, and much more. The only way to be successful is to learn from others and use a whole body and mind approach. Anyway, I didn't realize he was taking a picture - he thought I looked "pretty cute" all wrapped up in furry blankets. Danny calls me a pillow monster. I somehow manage a way to turn our bed into a mass of pillows, and fluffy blankets. I like my nooks to be cozy and safe.

Just before bed, after I turned out my lamp, I stretched out, closed my eyes, and pictured my body hovering above. I just wanted to picture my body and see what it looks like in my mind's eye. The moment the image appeared in my mind, I noticed there was a light blue, and medium turquoise blue color surrounding my body. It morphed and phased into white light, then pale blue, white, pale blue, finally resting on white as it surrounded my body. The colors oscillated around the peripheral of my body - with no particular section of interest. It was really interesting. It felt good. It felt positive.

I believe that I can make myself healthy, with help from western medicine, alternative treatments, nutrition, spiritual well being, stress regulation, exercise, attitude, and enough sleep. I'm realizing that there's a lot of dedication needed, but it's all for a great purpose, and it helps me excel in all areas of life. Sure, I would love to be sipping on a mammoth goblet of red wine, nibbling on truffle-infused sheep cheese, but seriously, who cares (and someday on a special occasion.....). We can't do everything we want, eat whatever we want, and have whatever we want. That's life. The most important thing to remember is that I have the opportunity to earn my health, and each time I earn something, each time I meet a goal, I'm fulfilled and proud of myself. I just have to give this more time so that I end up looking at this as a lifestyle and not a diet or temporary thing. There will be times when I can take it easy, but I need to earn it. This whole body approach is proven to improve overall health, and that's my goal. I have to stay focused and enjoy the positive effects of the changes in my life since my last MRI. My skin is clear, my weight is down to 140. I'm more calm, and my headaches are minimal. Of the 43 days since making these changes, I've only had 3 or 4 days of headaches. That's amazing.

This diet is not what most people choose to do with their lives. It's quite extreme. But, unfortunately, it's how we should all be eating. I wish it wasn't the case. I wish we could eat sourdough, homemade pizza, jelly, cookies, and all the yummy, white carb, white sugar foods that taste so delicious. The sad truth that no one wants to acknowledge (because it sucks) is that sugar (other than in whole foods) is very bad for you. White flour is very bad for you, white potatoes are bad for you, and table salt is bad for you. If there are ingredients in your foods, you should try not to eat them. Foods should be coming from the source. The problem is that people are busy, or tired, or it's expensive, or whatever. Usually, it takes someone getting sick to change their ways. Sometimes, even then, people don't change. I'm not saying that I can cure this brain cancer just with food choices. I wish that were true - and who knows, maybe I could, but the point is that we need to give our bodies a fighting chance. A platform to succeed. Even if you can't seem to give up all of the bad stuff, just try to cut back. You don't have to be as extreme as I am. Start small. Choose oatmeal over cereal. Choose a spinach salad over iceburg lettuce. Choose a quinoa salad over a potato. Choose brown rice over pasta. Choose steamed broccoli over honey carrots. Choose vegetable soup over clam chowder. Avoid the bread basket. You always have a choice. You DO have the will power if it's important to you. Make your health your priority. If I can do it (even though I moan and gripe), you can do it too. Moan and gripe with me!

Pilot Light

2011-12-06T18:10:00.001-08:00

Where is pepped up Jess? Danny and I just tried to jog around the lake but I only made it half way. I have the energy of a sloth. It's exhausting to lift each finger to hit the keys. I have over 40 emails that I haven't responded to (sorry friends). I'm overwhelmed. I hate when things get overwhelming. I wish I could just sleep it all away. I feel like I'm losing the fight, and I know that all it starts deep within me. If my pilot light's out, I'm in trouble.

Ride The Free Radicals

2011-12-05T15:42:00.001-08:00

I forced myself to get out and head down to the lake today. It took until noon to get me going, but hey, I still made it! All I could think of, other than the crazy variety of ducks, was the fact that my artemisinin therapy isn't effective unless I exercise. Even when I'm exhausted, I have to be able to rally and get the most out of this drug. My next MRI is on Friday, January 13th and I want to know in my heart that I've given this drug everything I've got. That I've encouraged the artemisinin to filter through my large intestine, swim through my veins, hurdle over my blood brain barrier, ride the free radicals into the cancer cells and explode them. That's how I picture it anyway.

I only have 13 more days of my artemix pills. From then I will take a few days off to remove the toleration levels, and then I will take 3-5 days of pure artemether. Artemether is the component that actually crosses the blood brain barrier, I've been using the term "artemisinin" as a blanket statement, but I've actually been taking artemisinin, artemether, and artesunate all three in combination. It's in the artemix pill. Anyway, I'm hoping that the final punch with the artemether will do a solid number. Then, after that, I will stop taking all doses of sweet wormwood and do a massive immune therapy boosting regime. It's important that I stop the sweet wormwood at least two weeks before my MRI because cell death can look the same as tumor cells. It's all so tricky and calculating.

Being healthy, overcoming this cancer, is a full time job. Erin, thank you so much for the suggestions, please thank your husband too! It is impossible for me to research all of the options, and I am so grateful that you passed that info along!

CRF (Cancer Related Fatigue)

2011-12-04T14:07:00.001-08:00

Sorry I've been MIA lately. I've been exhausted. I'm having a hard time getting up in the morning, and just after I eat my green drink I'm back into bed. Thankfully I have books around the bedroom to continue my cancer fight, even if I'm too tired to do much. One of the things I read, surprised me. Apparently, my exhaustion has an actual term. It's called cancer fatigue, cancer related fatigue, or CRF. My brain tumor is fighting for the nutrients I consume, and usually it's the tumor who wins, not my body (according to research). Apparently the brain tumor is similar to a fetus in the womb, it takes what it needs first (at least, that's what I've heard about fetuses).

The fatigue is something I can discuss with my new GP. The doctor at Seattle Healing Arts seemed to be the perfect fit. I have another appointment with her on Thursday to review all of my MRI scans, pathology, and radiology reports. She's a wonderful western style medical doctor and yet, alternative therapy minded. The perfect combo. It's important to have a combination of both. If I'm going to beat this brain tumor I have to straddle the line of traditional, alternative and some day, experimental. I will not look down on any treatment unless it causes more harm than good.

Anyway, I'm pooped. My eyes are droopy, my body is fatigued, and there is no amount of rest to knock me out of it. This thing always comes in waves, hopefully I'm on the crest.

Healing By A Village

2011-11-30T13:44:00.001-08:00

I am such a goober. I was laying in bed last night talking to Danny, when I realized that I didn't come up with the idea of finding cancer survivors. In fact, it was from a book that was given to me by a fellow brain cancer fighter, Jude. In the book (The Story Of Two: Fighting Serious Illness with an Attitude and an Advocate) was a story of a man who went to great lengths to survive his metastasized malignant melanoma. When I read that book, I realized that I should find more success stories. Without Jude's gift, who knows how long it would have taken me to figure out I could learn endless tricks from other cancer survivors. That's another wonderful thing about this blog, it has connected me with so many people that I never would have known. With my new friends, they bring with them knowledge, support, ideas, books, videos, doctor recommendations, researchers, and insurmountable hope. I'm so grateful for you! All of you.

Growing up in Friday Harbor, I was raised by a village. Now, I'm being healed by a village. Great things happen when great minds come together with a common cause. I can't thank all of you enough for helping me fight this. If you ever come across doctors, books, stories, treatments, research, please continue to send it my direction. I can't promise I'll try every outlet, and sometimes things fall through the cracks and I forget to follow through, but I'm working as hard as I can to explore each avenue. Thank you for continuing to help me stay up to date, and energized. This is quite a big challenge to take on, but like I've said in the past, I'm up for this - I can do it.

On another note, I want to share the late, but still exciting news of our friends Matt and AJ. Matt is Mr Movember, you might remember him from previous blogs. Anyway, during this crazy hectic month, Matt and AJ not only took on fundraising for my medical bills, but at the same time, their family grew! They welcomed twins. Here are a few photos that I stole from their Facebook pages :) Congrats you guys! And, welcome to the crazy world, Hazel and Owen.

Empowering Books

2011-11-29T20:05:00.001-08:00

I feel like a chicken with its' head cut off. I think it's pretty normal to go a bit crazy after a bad sickness, and I'm no exception. After 10 days of laying in bed, I went nuts yesterday and conquered too much. It was just so nice to be able to get up and goof around. I've not only started back up on my artemisinin pills, I also laced up and jogged the lake too. While I was jogging, I swung by the Green Lake Library to get a long over due library card (pun intended). While there I randomly picked up two amazing books.

About two weeks ago I realized that people survive cancer all the time, beating the odds and surprising doctors. It's something that I knew, peripherally, but somehow it hadn't completely sunk in, the concept just wasn't quite tangible. I started to think about it though, the other day. I wondered how people are doing it, how are they outsmarting their cancer? Ever since this diagnosis, I've been trying to find my way, slowly figuring out the way to win. Apparently, I'm not the only one who has looked to survivors for guidance. The first book I picked up at the library is called, Cancer: 50 Essential Things To Do, by Greg Anderson. This book, although I'm only a few pages deep, has completely changed my life. The author was diagnosed with a nasty metastasized lung cancer and given only 30 days to live. Crazy, huh. Anyway, Greg was pretty upset for a few days, but then he realized that people beat cancer all the time, and it became his mission to listen to other survivors, trying to figure out the common threads of action. I recommend it to anyone fighting cancer, and also for anyone in the inner circle of support. It's so well written, so real, and truly, it's an inspiration, a motivation, and I just can't say enough about it.

The other book I found is called, Brain Surgeon, A Doctor's Inspiring Encounters with Mortality and Miracles, by Keith Black, MD. It's a neurosurgeon, his life story, his surgeries and his perspective on things. A sentence in his book, in one instant, helped me realize that my brain is elegant (a word that I never would have used to describe my brain, yet fits perfectly). He is completely fascinated by the brain, and as he speaks about tumors and the brain, he helps me fall in love with the big grey squiggles upstairs.

Both books are empowering and positive. I'm so grateful that I can read again. I still can't conquer books the way I used to, but hey, reading is reading no matter how slow. The recovery from the brain tumor is recent enough that I can imagine life without being able to read. I remember the frustration of not understanding the concepts written on paper. I remember the lack of understanding with dialog and accents. I'm SO HAPPY to be able to read and understand written word. I will never take that for granted again. It's amazing how much reading energizes my soul and catapults me to a whole new mental state. Once you read something, you're a changed person. You've evolved. I love evolving.

New Doctor

2011-11-28T10:06:00.001-08:00

I'm so excited! I just made an appointment with a new doctor, a primary physician. She's at Seattle Healing Arts, and I'm thrilled to be a patient there. Look at all of the different therapies!

More About Our Therapies

Seattle Healing Arts practitioners offer a wide range of therapies for healing body, mind, and spirit, including:

Naturopathic Medicine

Neurofeedback & Biofeedback

Psychotherapy | Counseling

Skin Care

Sound Healing

Spinal Manipulation

Visceral Manipulation

I was referred to Seattle Healing Arts by a friend who loves her general practitioner, named Takla Gardney, but she wasn't taking new patients until February. So, I did the next best thing, I took the next available appointment, and let fate take its' course. Turns out, my new doctor is an MD, and specializes in Biodynamic Cranial Osteopathy. I get to meet her on Thursday.

I feel like this is the first step in a whole body healing approach. It's nice that my new doctor has all kinds of treatments at her fingertips. This is going to be great! Since she works with herbalists, I bet there will be someone who can partner with me on the artemisinin front. Very, very exciting!

In life, we have to take matters into our own hands, especially in medicine. No one is going to fight harder than you. Never forget that. I believe that there is no one sure way to heal. When we run into a road block, we have to outsmart the disease. My goal, obviously, is to kill the tumor cells in my brain. There are a lot of different ways to support my body to make it a tumor killing machine, and I'm on a mission to figure it out. Luckily I don't like being told, "No." If I hear something is impossible, I worry, and wonder if it's true, then I get frustrated and I look for holes. I will not roll over and give up. This nasty little tumor better look out, he's in trouble!

I'm Back

2011-11-27T19:39:00.001-08:00

Hello World! I'm crawling out of the deep sickness that tried to claim my life. At least, that's how it felt. Dramatic much? Yes. It's the story of my life, just ask my parents. In fact, my mom once caught me crying in front of a mirror to see what my sad face looked like. In my defense I was really young, like five or so, but I'm digressing...here's a photo taken on the day before Thanksgiving...not my finest moment. PS See Linda (Dan's mom), I love that blanket you gave us for Christmas last year. Bet you thought I was just being nice :)

Now that I'm back in the land of internet, I'm catching up on my emails. Over the past several days I've been given such amazing compliments on the blog, and actually if I think about it, I've been flooded with flattery since the whole tumor-gate started. I've been raised to graciously say, "Thank you," when given compliments, but I must say that it's hard to hear so much praise. It incredibly kind, but at the same time I feel guilty, like I've fooled people. I need to make sure that it's widely known that when I'm cranky, I can be bitchy, and short. I say things that are stupid. I have an uncanny ability to put my foot in my mouth and completely offend people or accidentally hurt feelings. And most embarrassingly, I judge people by their facebook posts (when I actually hop on and check my messages).

I believe the only thing that makes me special is that I've opened a window to my soul for anyone to see, that being the blog. People are inherently good, but we often don't know the thoughts swirling around in the minds walking past. We definitely don't know what the person in front of us is going through (unless you live in Friday Harbor ((cheap small town joke)) - but even then, we have no idea how people are truly feeling). The truth is that we don't know what's in another person's heart, or mind, but if I had a window into each person's heart who reads this blog, I believe that each one of you is full of complex life stories, love for other people, happiness and kindness, work ethic, and morality. I am blown away by the kindness and thoughtfulness of the comments I've received, and I need to make sure that you all know that I have the energy to fight, research, fight some more, dust myself off, scale over walls, live with joy and love in my heart, conquer fears, and contemplate all things because I receive endless love and support from all of you. I would not be me, without you.

Happy Thanksgiving

2011-11-23T17:44:00.001-08:00

The night after the last post, we checked my temperature and it was at 101. Apparently I was feeling slightly better but that was because I had been feeling so horrible before. Each day I've been getting progressively better but the temp is still hovering around 100 degrees. So, effective immediately, we just decided that this Thanksgiving will be Danny and my first holiday together alone. We've decided not to bring my infectious body around our loved ones. So, happy Thanksgiving to all of our friends and family, from afar :). I am grateful for my life, Dan, family, friends, health (although slightly compromised at this point in time), and the love that I receive every day. Thank you for all of the support that I am fortunate enough to receive non-stop. Thank you for the emails lately, I've had a constant stream of "kick toom-ah butt" energy sent my way and I appreciate it so much. Danny and I are incredibly grateful for all of the team members joining us on this fight. We wish you all a very happy Thanksgiving, full of warm hugs, and deep belly laughter.

Brains Behind The Operation

2011-11-20T19:49:00.001-08:00

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."

"Lint Is A Shell's Best Friend"

2011-11-17T13:44:00.001-08:00

Hi Friends. In the quest for more laughs, here is the first installment of Marcel The Shell With Shoes On.

FYI I woke up with a fever this morning and it's getting progressively worse. It's that heavy lung, sore throat thing, so, of course, I canceled the little surgery. Can't go under a knife when I'm not feeling well, it would slow the recovery, right?!? Right? Eh. Back to bed.

Laugh Of The Day

2011-11-16T10:25:00.001-08:00

"Guess why I smile a lot. Because it's worth it." - Marcel

Gotta love friends that send random videos, just because it's a Tuesday. I know, I know, it's Wednesday, but I didn't get the email until today :).

I just laughed so hard that tears were running down my face. Then started it over and watched it two more times. I'm a total sucker for ridiculous and cute (best when it's both) little things and it doesn't hurt to have tiny red shoes and one eye.

Thank you Meghan!!! Love it. I think I'll go watch it again.

I'm Pooped.

2011-11-15T15:07:00.001-08:00

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.

Fun New Recipes

2011-11-11T11:07:00.001-08:00

I am having so much fun on this diet! Instead of looking at all of the things I can't eat, I started looking at all of the ingredients I CAN eat. At first it was tricky finding recipes, but then everything changed, I started looking at food logically. Since I'm eating a whole foods diet, the most logical spot to look for recipes is raw food diet websites - the whole raw food movement is based on using whole foods. Anyway, I can take the raw recipes and tweak them, like heat the chili recipe below, or add brown rice to my pseudo sushi. Here's two very fun dinners that both Danny and I loved. Even my friend Jenny loved it (she came from Wenatchee to spend the night and catch up).

Bad lighting but delicious chili

Vegetable Chili

Chili:
3 tomatoes
1 green pepper
1/2 of a purple onion
4 large cloves of garlic
1 cup of shiitake mushrooms (remove the stems)
3 stalks of celery
1 tablespoon cumin
1 tablespoon of oregano
2 teaspoons of hot red pepper powder (I used cayenne pepper powder)

Topping:
1 cup raw unsalted walnuts
1 tablespoon of extra virgin olive oil
1 teaspoon of coriander powder
a good pinch of sea salt

Dice all of the chili vegetables (except for the garlic - mince that) and put them in a bowl. Add the seasoning and mix it all together. Take half of the mixture and put it in a food processor or a blender. Blend it all up until it's smooth. Pour the blended mixture and the chopped stuff into a pot, stir and turn the burner on to medium low.

While the chili is warming, put the walnuts into the food processor or blender. Blend until until they're mostly chopped. Toss in the seasoning and olive oil. Blend just a bit more so that the walnuts are coated with the seasoning.

Check the chili and make sure it's hot enough. Dish the chili, then add a large spoonful of the walnut topping.

Sushi

Ingredients:
nori seaweed sheets (I used roasted)
1/2 cup julienne red bell pepper
1/2 cup julienne purple cabbage
pickled ginger

Avocado filling:
1 avocado
2 large garlic cloves - minced
1 teaspoon of cayenne pepper powder

Brown rice filling:
1 cup of raw brown rice
2 cups of water
1 tablespoon of ginger powder
1/4 cup of sesame seeds
1 teaspoon of sesame oil
2 large garlic cloves - minced

Start by mixing all of the brown rice filling ingredients in a pot on the stove. Turn the burner on hot. When it starts boiling, turn the pot down to low, or medium low, just low enough so that the water is simmering and put a lid on it. It should be done in about 50 minutes. When the rice is done, let it sit for about 10 minutes to cool.

In the meantime, julienne the veggies, and find your sushi mat (if you don't have one, you can still make this recipe but you'll have to be gentle with the rolling).

Grab the avocado filling ingredients and start by mushing the avocado in a bowl. Mush it until it's creamy, then add the minced garlic and the cayenne pepper powder. You can add a pinch of sea salt if you'd like, but I don't think it really needs it. Stir it in nice and evenly.

Once the rice is cool, start by grabbing one nori sheet. Scoop rice into the center of the sheet and spread it out to either side of it, leaving the top and bottom bare (if this isn't making sense, I recommend googling "how to make your own sushi" there are a billion photos out there). Anyway, lay out the veggies in a row in the center, from side to side, and spread the avocado mix on top of that. Sprinkle the pickled ginger along the avocado. Then, start at the bottom (where there should be no rice), and start rolling toward the top, you will roll over the center, and keep rolling until you get to the top where, again there shouldn't be any rice. Get the very end of the nori a little wet, you can lick the entire end of the sheet, or get your finger wet from the faucet, then roll completely. The nori will bind to the other nori during the rolling process. Grab a very sharp knife (I chose a serrated bread knife), and cut your roll into little sushies. You're done! Yum!

Optional: I grabbed wasabi powder, soy sauce, and created a spicy mixture for dipping. It was a huge hit! Both Danny and Jenny said it was delicious. At least, they did when they were done blowing their noses :)

Pretty fun to be two-for-two on the recipes!

Sorry if the sushi instructions are confusing. It's so hard to explain. Anyway, if you're going to try it out, maybe check out some goggle images so that it all makes sense.

Enjoy!

Mo For Me?!?

2011-11-08T14:55:00.000-08:00

I don't know how to write this blog. I've started and deleted the whole thing about three times already. I guess I'm just at a loss for words. I'm embarrassed but grateful at the same time. It's confusing and hard to sort out. I guess I'll just start from the beginning.

I received an email a few days ago from my good friend AJ. It was an email to a billion of her friends:

Hey guys,

Matt is participating in Movember this year, although doing it a little differently. He will be growing a nice and bushy stash per usual, but he will be raising money to help out the medical expenses of our dear friend Jessica Oldwyn who is battling brain cancer. To learn more about her brave and courageous story check out her blog:

www.jessicaoldwyn.blogspot.com

and to monitor Matt's stash growth and to learn how to donate check out his blog:
www.moforjess.blogspot.com

Please donate!! We thank you for your support!
AJ and Matt

Of course, as I read it I turned bright red, and thought to myself, "Those little BUGGERS!" They didn't even ask me. Then I realized, of course they didn't, I would have said, "no." :) I don't want anyone to be put out, and I'm already grateful for all of the support emotionally and physically that people give. I'm overwhelmed. It's true AJ & Matt fashion, always thinking of others. They are a force to be reckoned with, changing the world one massive effort at a time. Thank you AJ, for helping spread the word, and Matt growing your lovable facial hair. I am incredibly grateful that you chose to help me in this way.

Matt and AJ have been wonderful friends to both Danny and I. We grew up with Matt, shared a billion laughs and memories, and from the moment I met AJ, I was completely in love. They are both possibly the most generous people I've ever met. When the Haitian earthquake hit, AJ and Matt threw a huge fundraiser in their city of Montreal. From the moment I met each of them, they've lent support, love, laughter, and kindness. They're wonderful.

Not only are they a mainstay in my life, they also are responsible for Danny and I coming together. When Matt and AJ were leaving Seattle and moving to Montreal, they threw a going away party. I remember specifically at one point in the night, I looked over and saw Danny come toward me, precariously carrying three drinks at once (he swore they weren't all for him). I noticed how handsome, how tall and strong he was. I looked into his eyes and thought, "Wow! Danny's looking goooood." He asked for my number that night. A few months later, on our first date, he told me that when he first saw me at Matt and AJ's going away party, he was walking through a doorway carrying three drinks. He said he almost tripped and his heart skipped a beat. He thought, "Woah. Jessie Oldwyn sure has grown up." How cute is that! In the same moment, we were in awe of each other and it's been the same way ever since. I still think he is the most handsome man on Earth. And as you all know, the kindness man on top of that.

Here are some fun photos I dug up to share:

The first time I met AJ. We were all playing home run derby, obviously not taking it as seriously as the boys.

The going away party. AJ and I were on a hunt for a lost alpaca. The tuques on our heads were to represent her homeland, the great white Canada.

You'd think I'd be crying since she was leaving. Good thing she doesn't appear to be offended :)

The only picture I have with Matt that night is when I stole a bite of his lamb burger. Oops.

Someone told us to look fierce. Done.

Nate (Matt's bro), Matt, Dan & Dallas at Matt and AJ's wedding.

Danny and I at Matt & AJ's Wedding

My brother, Matt, Me, AJ & Larry visiting in Friday Harbor this summer.

I am very embarrassed to imply that I want people to donate. I am only sharing the information because AJ asked me to. Please check out the blog just to watch Matt's mustache grow, and laugh. He's hilarious, and it will be a wonderful distraction!

www.moforjess.com

What an honor. I've never had anyone grow a mustache for me! So cool.

The Time Will Come

2011-11-06T18:54:00.000-08:00

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.

Thriving

2011-11-04T11:32:00.000-07:00

The other day my mom surprised me with a puppy spa day for Emma. Emma loves getting pretty and clean, and the dog was starting to get stinky. It's our fault since we take her out for jogs, and walks, regardless of the weather. Her nickname should be puddle. Anyway, while the sweet dog was getting beautified, I sat at a cafe next door downloading artemisinin research articles onto the blog.

It was so much fun sitting at the cafe, just a half a mile from our home. I enjoyed the walk, crunching leaves beneath my feet. Even though we've been living in Green Lake for a full month, I still hadn't been to a coffee shop, I had done all of my blogging and computer work from home. It was nice to have music, and delicious smells. The people coming and going, studying, visiting, laughing and reading, it was invigorating. It made me feel alive and important. That probably sounds weird, but there's something about being out in society, amongst people, that makes me feel like I'm doing something, something more than just being, just existing. Anyway, I loved it. Because of my dietary restrictions there wasn't anything I could eat, but I had a hot tea and that was good enough for me. If the cafe was busy I would have left, no need to take up the table, but I got lucky and there was plenty of room. It was a really fun treat, and a great morning (both for Emma and for me).

The downloaded articles on Artemisinin can be found on the right side of the blog, under Pages, and Artemisinin Research. It's just under the image of my big old tumor....oh my gosh, I just checked the link and the research isn't displaying. Damn. There went three hours of time. I'm not that handy with technology, especially when it comes to this blogger stuff. Let me try again and see if I can upload successfully this time. There's no easy way to upload documents. Please bare with me.

On another note, tonight is the WPIG Pigture Perfect Silent Auction! Yay! Hopefully my piece of art will raise a few bucks for Ryther. Even my parents are coming, and that's very exciting!

As for the diet, I've had a few friends asking what I'm able to eat, or what my current restrictions include. Here's my deal:

No meat
No diary (except for a glass of milk to take the artemisinin, dairy fat has the best absorption rate with the pills)
No processed sugar
No four
No alcohol

But, I CAN eat:

Vegetables
Fruits
Nuts
Seeds
Legumes
Whole grains (brown rice, bulgar, quinoa, etc)

Here's a typical day:

Breakfast:

Green Drink (a blender stuffed with spinach, one cup of water, a teaspoon of fish oil, a teaspoon of flaxseed oil, half a cup of blueberries)
Vitamin E (400 I.U.), Vitamin D3 (400 I.U.), Vitamin C (500 mg)

Snack:

Apple or a handful of mixed nuts

Lunch:

Mixed greens salad (chopped purple onion, raw apple, ground flaxseed, squeezed lemon, shredded kale, fresh basil, fresh cilantro, chopped raw garlic, cracked pepper - on days when I have it, avocado)
Black beans or brown rice if I have it left over from the previous night (I cook the beans from dry beans to avoid the chemical in canned goods)

Snack:

Green Drink (a blender full of mixed greens, and a stalk or two of kale) or an apple (we have a whole box of organic ambrosia's. They're delicious! After that I imagine I'll change up my fruit.

Dinner:

Mixed greens salad (same as above)
Steamed broccoli
Brown rice or some type of legume

Surprisingly, I don't live my life starving. I feel superb. I have more energy, less headaches, and I feel great all around. I'm still have my bad days of exhaustion if I do too much, but I feel so much better. I know that I can live on this diet forever if I choose to. Basically, I eat any and all vegetables, I eat some fruit but I try to keep it limited. Same with the legumes and whole grains, if I eat to much of those I get bloated and I get a stomach ache. I also prefer to eat raw veggies (except for broccoli, raw broccoli grosses me out).

So there it is. That's my basic diet. If you live in Seattle, or head there from time to time, my new favorite place for fresh juices and raw vegan food is Thrive Cafe. It is truly unbelievably delicious. It's heaven. Try it out! My favorite fresh, organic juice is Refresh, and I finish it off with an Elixer Shot, the Cobra. Both are delicious and make you feel like you're ready to run a marathon, and conquer the debt crisis, both at the same time.

Not A Freak-Er-Out-Er

2011-11-03T21:41:00.000-07:00

The past few days I've been collecting medical records. I took a bus yesterday to get copies of all of my MRI scans and all of my radiation reports. Oddly, it shows that there was no tumor growth until between the MRI of July 14th and this current MRI. That means that all of the new growth was in a 3 month period. That's really bad. I didn't freak out when I read it, which is surprising. I guess I'm not much of a freak-er-out-er (I leave that to my mom - sorry mom, but it's kinda true). I have bouts of panic, every couple of months or so, but for the most part I'm oddly calm about this whole thing.

I cried four days after this past MRI, but it wasn't about the request to start radiation. It was after seeing a friend for the first time. Our friend Eric stopped by the house to drop something off, and after he left I finally started crying. I sobbed and told Danny that it's so hard to see the kindness in peoples eyes, and the sadness, and it's because people love me and they care. I hate that my friends and family have to worry and hurt over this. I feel like this brain tumor shouldn't exist. My friends shouldn't have to know about this area of life. It's not like my friends need a lesson in compassion, they're already at their full compassion level. I don't think any of them could be more compassionate in their lives, even before they had this whole tumor thrown in their lives. I just hate this. I hate that people hurt. I hate that people are scared. And it's all because of me. I'm sorry to all of my family and friends that this tumor is effecting you.

It's Official: Brain Cancer

2011-10-31T11:11:00.000-07:00

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%!

Radiation?

2011-10-25T16:03:00.000-07:00

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.

2011-10-25T11:42:00.001-07:00

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 nauseous 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.

2011-10-25T06:35:00.000-07:00

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.

MRI

2011-10-24T20:20:00.000-07:00

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!

Emotional Eating

2011-10-23T13:45:00.000-07:00

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.

Watercress & Wunder Runners

2011-10-20T10:38:00.000-07:00

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

"Hope"

2011-10-19T11:46:00.000-07:00

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.

"Hope"

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." - http://www.ryther.org/

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.

Mushroom Madness

2011-10-14T10:12:00.000-07:00

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.

Some Days

2011-10-13T14:34:00.000-07:00

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.

Lopsided Unicorn

2011-10-07T15:18:00.000-07:00

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.

Tossing Frizzy Hair To The Wind

2011-10-03T15:35:00.000-07:00

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.

Racing The Bus

2011-10-02T14:26:00.000-07:00

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.

First Solo Metro Experience

2011-09-30T12:13:00.000-07:00

Things I've learned living in/about Greenlake:
1. There are as many dogs as people
2. Dogs don't mind wearing soiled poop bags on their back as long as they get to go outside
3. Dressing up is wearing Lululemon
4. One out of two drivers stop for pedestrians (a great ratio for the city)
5. People smile when you walk/jog by
6. Bus routes are convinent to get into the city, or anywhere else you need to go

So far, this neighborhood is perfect for me. I am officially in love.

Our house is a complete disaster zone, although better by the hour.

We live one block from a bus route and three blocks to another. This afternoon I am going to attack the metro to get to my doctor appointment on Capital Hill. I am nervous and excited to navigate the city alone. We'll see how it goes! It had been sunny and warm, but the clouds are rolling in. I might be walking in the rain. I guess it's now or never - maybe it's best I just jump in and get my feet wet :) It's going to be raining indefinitely for the next 10 months anyway. I kid, I kid - I'm sure there'll be a few rainless cloudy days too.

Little Bad Mole

2011-09-26T13:10:00.000-07:00

About a month ago I had an appointment with a dermatologist to check all of my moles. Unfortunately, two moles were removed and one of them came back with precancerous cells. Although it's not a very big deal, the pathology showed that there is still some precancerous cells in the area around what was previously the mole. I was supposed to have a one hour procedure tomorrow to remove the rest of the dangerous area, but this morning I panicked.

You see, the area in question is on my breast. The doctor already removed a big chunk and she wants to go back in. I'm antsy, nervous, apprehensive, and all around sick about the thought of going back in. A woman's breast is a very private area, and is such a symbol of femininity. The first procedure took three weeks to heal, and now it's a big ole' lump of scar tissue.

I might not be able to avoid another procedure, but I cancelled the one for tomorrow which was supposed to take place in Wenatchee. Instead, I called Virgina Mason in Seattle which is a leading medical center for dermatology. I have an appointment for Friday to have an initial meeting, at which point I will have a referral for the surgery.

It's odd, I have been more upset about this silly little procedure than my brain tumor surgery. At least I now know that I will be in the hands of the best at Virginia Mason. I've learned a lot about medical things in the past year and a half, one of them being, go to the best whenever you can. It's your body, and anything less than the best is less than you deserve. Follow your gut and don't feel bad. It's your body and you are your best advocate.

I know that this goofy little mole thing that I'm cleaning up on my breast is absolutely NOTHING like breast cancer, but it makes me feel for all of the women that have (or have had) breast cancer. That is some scary, scary stuff and for me it has been incredibly violating. I have a whole new respect for breast cancer fighters, survivors, and victims. I admire you. Truly.

Crab Apple Kitty

2011-09-23T14:36:00.000-07:00

Stella is in kitty cat heaven. At the vet's office, she was gently given a sedative and she walked into my lap. She relaxed, and when it was time, I laid her down onto a blanket. They injected her rear leg so that I could pet her head. I laid my face onto the table, and looked into her eyes. I told her how wonderful she was and what a good girl she was being. I watched the light go out of her eyes, and although I was sobbing, it was a relief to know that she wasn't in pain any longer.

It's amazing how quickly health can deteriorate. Yesterday was the first time I've watched life go out of a body. It was not easy. All I can hope is that when I die, I will have someone petting my head, looking me in the eyes and telling me kind things.

It wasn't just me with Stella yesterday, it was also my mom and dad. We all cried. We all loved her. I couldn't help them, I didn't have it in me, but they buried her underneath their crab apple tree. It's a befitting location since she was also known as a big B to so many. My mom always laughed that I would call her Pretty Pretty Princess. Stella was a tough, sassy, sharp clawed time bomb that was not safe around children or most adults. But to me, she was my tame little kitten.

Good-Bye Old Girl

2011-09-22T14:12:00.000-07:00


Breakfast Soup/Smoothie

It looks gross, but I'm telling you it's delicious. Here's how you make it. Chop up one nectarine (make sure it's super ripe - very fragrant) and toss it in a blender. Once it's blended fill the blender full of spinach (stuff it in there). Add water to the thickness you desire. Add 1-2 tablespoons of flax seed oil. Blend it all together until it's thick and kind of frothy. Aaaaand, serve. It's delicious. You can't even taste the spinach. In fact, it tastes like a nutty nectarine drink. It is wonderful!

That is how I started my day. I'm trying to be good to myself because today is the day that my baby princess Stella the cat will be leaving this world. I slept on the floor with her last night in a sleeping bag. She has trouble getting onto the bed these days. I've cried and cried, and cried and then cried some more and I know that I still have hours of crying in the future.

As I told a friend in an email today, since I don't have children, this cat has been my baby for the past eight years. She was a stray that needed love, and I was fresh off of a disastrous breakup. My fiance called it off less than two months before the wedding by using the words, "I'm not attracted to you anymore." If that doesn't hurt, I don't know what does. Mark that down as possibly the worst breakup line in history. My parents helped me move from Texas to Wenatchee, Washington and that is where a sassy, headstrong cat came into my life.

Ever since we tamed her, she has followed me around like a shadow. She has been a rock in my life, a confidant, a snuggle buddy, and entertainment. She makes me laugh so hard.

The other day, while I was packing up for the big move, I found a journal. It was from several years ago. I had started writing to an unborn child, a child that I hoped I would someday have. In it, as I was writing, Stella came up and curled up on my lap. She always had a sense for when I needed love. You see, I was married before Danny (it was a few years after the bad breakup - my twenties were quite eventful). On the day after the wedding, my husband told me he no longer wanted children. We had talked about having children the whole time we were dating, and then all of a sudden, in one day, a very important after the fact disclosure happened. I should have just annulled it then, but I thought that I had a responsibility to my husband, and the ideal of marriage. Three years later, the inevitable happened. It wasn't just the child issue, it was everything, everything was wrong. My main point is that I had several very sad, very hard years. I felt isolated, unloved, and trapped. Through it all, I had Stella. She never left my side. We gardened together. We went on walks. We cleaned the house while I cursed her in jest for being so hairy. She was my baby. Even when I would go on trips, she was always waiting for me, excited to be with me, always happy or ready for a nap.

Sometimes a pet is just a pet, a fun little buddy to make you laugh or enjoy for entertainment purposes. Stella was a friend. One of my best friends.

I know it's time to let her go. She just threw up again last night even though she has been on two different types of medicine, one of them twice a day. It's so hard to play "God" and put her to sleep. It feels wrong, but it feels even worse to make her suffer. She's in a lot of pain, and it hurts me to look in her eyes and see the sadness.

Enjoying Life's Pulse

2011-09-20T12:55:00.000-07:00

We should have the keys to our new place in Greenlake in two weeks. Fun! This move signifies freedom for me. I will be able to walk all over the place running errands. It's literally thrilling. My heart starts going crazy just thinking I'll be able to take care of myself, and the daily things for Danny and I. It has been painful to be stuck in our Wenatchee home, isolated from humans (other than my parents and the friends that stop by). I can entertain myself, I like to listen to music or do things around the house, but there's something about being around people in public, looking at life as it goes by. It's fun. It's therapeutic and magnificent. Life has such an amazing pulse, it's in humans, in pets, in the animals in nature, trees, plants, bugs, even the wind - and when it's all combined, when you look around, it's a lifeblood.

Breakfast On The Patio

I've already been packing for a few hours this morning, but it's time for a breakfast break. I toasted a piece of Dave's Killer Bread, sprinkled an egg with loads of turmeric, and chopped a clove of garlic for the top, and I've got my broccoli tea. I would have added sprouts on top of the toast, but I'm fresh out. It might sound like a crazy meal, but it's delicious and full of cancer fighting elements. Turmeric is insanely important to fight cancer, it's right up there with the brassica family.

I think the hardest part about dealing with cancers and tumors is the diet. There are so many different voices from specialists and they definitely don't all agree. Each illness varies, with the exception of sugar. Sugar feeds cancers and tumors. Sugar is incredibly bad for you. The dispute falls between the doctors that believe that all sugar is the same, and others who still recommend fruit in the diet. (The doctors who recommend removing fruit from the diet exchange the fruit for supplements to get the essential antioxidants and other benefits from the fruits without the sugar.) Some strongly believe that not only breads, pastas, and rice need to be avoided, they also want whole grains out of the diet. I just know that I can't live without some whole grains, so I'm still including healthy whole grains, but keeping the carbs as a small portion of my overall diet.

The brain tumor suggestions for diet is a complete mind game. It's tricky, it's frustrating, and if you over analyze each piece of food, every meal, looking for failure, it will make you crazy. It's impossible to overlook diet, it's the number one way to try and slow the tumor growth but I still have days when I eat poorly. In fact, for the first time, Danny and I went camping. I hung out with our friends eating Cheetos, and Polish sausages, but I'm still sick from all of the bad food. That's the thing that's crazy. If you eat really healthily, if you take a day or weekend off, you will pay for it. When I woke up on Sunday, all I wanted was a cabbage salad. Sounds weird, but my body was craving the crunch and the way I feel after I eat it.

Our First Camping Trip

Tapering Off

2011-09-19T20:26:00.000-07:00

Today is the first day that I'm not taking an anti-seizure pill (although I have to take one tomorrow). YAY!

Let me explain. Originally, I was prescribed 1000mg of Divalproex a day. Last week, I only took 500mg per day and now, I'm down to a pill every other day for the final week. By next Monday I should be done. I'm FREE! Hopefully, not only prescription free, but also seizure free.

I want to thank my friend Nancy who is a pharmacist. I was adamant to get off of the medication, and my nurse at the UW, as soon as I told her I was not going to follow her standard of care, never again responded to my emails for a taper down schedule. So, Nancy helped me plan a tapering of the drugs and I really, really appreciate it.

I have been incredibly fortunate to have so many people helping me throughout this journey. At each turn, I get great support.

I'm still scared to have a seizure, but each time the fear creeps into my mind I take a nice deep breath, and exhale slowly. I will not live in fear. I will not take drugs that wreak havoc on my body and mind. I will not give up. I will not just do what the doctors tell me to do. I will make my own decisions. I will research my options. I will try to keep my care natural. If my health deteriorates, I will reevaluate.

2011-09-15T12:06:00.000-07:00

A final email from Walt (sent to all of Dee Dee's friends), Dee Dee's husband, which I received this morning:

Hello all,

This note is to let you know that Dee Dee passed away in her sleep earlythis morning. It was a long journey for her and we trust she is now atpeace. I know how much your love and support meant to Dee Dee over thislast year. Thank you for that.

We plan to have a gathering at the Senior Center next week and will sendout a notice once arrangements have been made.

Walt

May Dee Dee rest in peace, and Walt know that he's loved.

Prayers For Dee Dee

2011-09-14T17:57:00.000-07:00

I received a very sad email this morning. You may remember Dee Dee Pearce from the comments on my blog. Dee Dee has always shared kind words of inspiration, always lifting me up. When I started my struggle, she was dealing with some abnormal breathing issues. The doctors ended up finding a large tumor behind her lungs (which they believed was benign) and as things progressed, it turned out it was lymphoma. (I'm simplifying her journey here - it is long and arduous, although you wouldn't know it by her attitude.) I'm very, very sad to share that her condition has greatly diminished. For islanders, you may also remember her as Diane Pearce. She gave many children (including myself) piano lessons. Here is the email, please read it below and send your love, your positive thoughts and prayers her direction.

Hello all – It has been quite a while since Dee Dee’s last update, so I will fill in with a current status report. A little over three weeks ago, Dee Dee’s health started into a steep decline. Her strength has eroded daily, her appetite has diminished, and now she sleeps most of the time. A hospital bed was brought in for two weeks ago which has made her far more comfortable. She is frustrated because she has lost her ability to speak, for the most part. A few of Dee Dee’s closest friends and I are providing 24/7 care. Dee Dee enjoyed several home concerts provided by our musical friends. These were a real joy for her. Though she is too tired now to receive visitors, I know she cherishes the memories of those visits as well as the many notes, calls, and cards from you. Thank you very much for your support during this time.

Walt

It breaks my heart to think about Dee Dee in pain, unable to do the things that she loves so dearly. She loves her horses and music; her joy is in the beauty of nature and those around her. Dee Dee has been a rock in my support system, and I am so grateful for her. Please help me send love waves her direction so that she can have a full warm heart, no pain, and more energy so that she can visit with her husband and friends.

On another disappointing note today, my cat is very sick. The vet thinks it's bone cancer. I know it sounds crazy to love a cat so much, but I've been crying all day. I pictured her, Stella the Pretty Pretty Princess (a nickname that I always took seriously, but everyone thought was a joke because she used to attack people), on my lap until the end. In fact, I was more worried that Danny might get stuck with too many pets if I die. It didn't occur to me that she might die first. How selfish of me. So, in the meantime, by the recommendation of the vet, we're going to pump Stella full of oral pain killers, vitamins, steroids and antibiotics, hoping that it makes her better. It's not lost on me that I'm doing to my cat what I won't even do to myself. At least I have a few weeks before I have to make a decision about Stella. I can't even think about it without sobbing.

The bright side of this tough day, has been the decrease of my medicine. Instead of just becoming despondent with all the bad news, I took a 2 hour nap then got back up. I did a load of laundry and started a new batch of sprouts. Just but cutting back to one 500mg pill a day of the Divalproex gives me more energy. The energy helps me conquer more, and put things in perspective. It helps me keep a positive spin. Although I've been crying off and on all day, I'm still functioning. That's big news for me. It makes me feel strong and capable. Capable of anything, even kicking this tumor's butt. I'm just sad that we can't all kick cancer's ass together.

Good-Bye Anticonvulsant.

2011-09-12T16:44:00.000-07:00

Sorry, I've been off my computer for a few days. My mind is mud. I can't think. I have had nothing to write because my brain is a slug. I have feelings and thoughts, somewhere in my gray hazy matter, but I can't connect to them. I can't even do more than basic sentences without needing a break.

Doctors don't even know what exactly causes seizures. They think it's an overactive brain (I'm simplifying here), therefore they prescribed me a drug that blocks or slows specific neurotransmitters. Now, I'm running on a portion of the firing that I usually have. My brain is half asleep. Think lobotomy.

Yesterday, it got so bad that I emailed my nurse and told her I want off the Dekopate. I asked for a schedule to decrease the medicine. It's too much. Also, over the weekend, I noticed a small rash on my right shoulder. In the Patient Advisory Leaflet (pharmacy info) under the Side Effects portion, it says, "Symptoms of a serious allergic reaction include: rash..." It continues to mention that the rash is a sign of severe liver problems. That sounds fun. All in all, I'm exhausted, mentally slow, my vision is blurry, my moods are horrible, my heart palpitates and I'm just a fraction of myself. I can't even write. I can't think.

So, today I did not take my morning anti-seizure pill. I emailed my nurse and reminded her that I want a schedule to decrease the dosage, and I mentioned the rash.

I refuse to live like this. I might not be able to control some of the biggest things in my life; I can't drive to get to the grocery store or even a doctor's appointment. I also can't change the fact that I have the tumor nugget growing in my brain. But I can limit the bad drugs that ruin the quality of my life. It's one small step that can help me be happier.

On this pill I feel like I'm slipping away. I just want to get back to being me, even if that means a seizure here or there.

Sprouts Days 2 & 3

2011-09-08T14:56:00.000-07:00

Day 2

Day 3

The babies are growing! Each morning and evening I fill the jar 2/3 full of water and swish it around. I drain it and leave the jar propped so that any excess water will drip out. I keep the jar in a dark area, nice and cool. The only problem, so far, is that I want to eat them now. I can't wait to be able to eat them every single day!

Sprouts X2

2011-09-05T19:38:00.000-07:00

I'm starting a new round of broccoli sprouts. Hopefully, this time, with all of the helpful suggestions I will be successful. I feel like the instructions in the pamphlet were lacking detail. It was confusing. Either way, I'm trying again. I'm starting with three tablespoons of seeds and about a cup and a half of fresh water. They're going to soak overnight in a dark place and rinse them in the morning. I'll let you know how it goes :)


Minutes Into Soaking

I'm Becoming A Mossback

2011-09-05T12:35:00.000-07:00

Well. Things changed again. I never started taking the new pill. When we picked up the new prescription the woman behind the counter said, "That will be $192 please." I looked at her wide eyed, and quickly asked her if I HAD to buy it. Fortunately, she was incredibly kind, and said absolutely not. She recommended that I contact my doctor and ask for a different, more affordable drug (for the record $192 was just the portion that I had to pay out of pocket, the full price tag for the drugs for those without insurance was almost five hundred dollars. Yuck).

I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.

Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.

It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.

As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.

Meds Meds Meds

2011-09-01T13:45:00.000-07:00

Sorry it's been so long. Our lives have been nuts. We've traveled from Wenatchee over to Seattle, then back to Wenatchee and then within 24 hours we headed back over to Seattle where we've been for the past several days. We're trying to get my anti-seizure medicine dialed in. Our first appointment was with a neuro-oncologist, and she seems to be incredibly kind (we had never met her before). We talked about the different side effects from the medicines and they all have very similar problems. Mainly depression, suicidal thoughts, suicide attempts, irritability, anger, panic attacks, violent attacks, frustration, exhaustion and weight gain. Of course, not all of the side effects occur in all patients, but I hate that I see several of them in my current drug and feel them in my daily life. It makes me feel trapped in my body. In the appointment we talked about the other anti-seizure medicine that I took before and after the brain surgeries, Keppra. I had forgotten the name, but I was quickly reminded by Danny that the drug had the same side affects as my current drug.

Anyway, Dr Graham (my new neuro-oncologist) prescribed a new drug and we went to fill it. After having read all of the paperwork I started freaking out. The drugs are so strong, and I would have to stay on my current drug for two months while slowly increasing the new drug. Double medicine? Seriously? I can't even handle my current drug! After the two months I could decrease the amount of the old drug.

The worst part though, is that the new drug carried an even more severe side effect on top of my current pills...if I was to notice any type of rash on my body, or sores in my mouth, I had to stop taking the drug immediately. The irritation showing the fact that it was causing my immune system to fail which could kill me. This drug literally can lead to death. What is more stressful than that?!? It's the whole thing I'm trying to avoid! Why in the world would I risk my health just to stop a seizure or two? I don't care if I never drive again, I don't want to take these stupid drugs! The neuro-oncologist took this side effect quite seriously, in fact one of her other patients called it "The Death Rash." She was teasing, but I believe there's always a percentage of truth in each joke. When we were leaving our appointment, Dr Graham gave her personal pager (for use day or night) for immediate contact in case the [death] rash occurred. Exactly what you want to hear when starting a new drug.

Later that night, Danny emailed Dr Graham, and we decided that this is the wrong drug. I told the doctor that I hate taking medicine already, I don't do well with extra hormones or medications of any type. I feel crazy from these stupid anti-seizure pills. Anyway, I told her I would be willing to try one more different type if we can get started within a week, but I'm not willing to wait for two months with progressively negative side effects. I feel like I need the benefit of the pills to out weigh the cost and at this point they certainly do not.

So, today I will start taking a different, newer pill on top of my current pills. It will be bad for a week and a half where there's an overlap of drugs at which point the old drug will be weaned off. I will be doubled up with side effects so I'll probably be a raving lunatic that wants to snap puppies necks. This is the last chance cafe for my neuro-oncologist to trick me into ingesting these poisons, after that, if this doesn't go well, I'm just going to risk it. Forget the anti-seizure medication. I don't need to drive, I can swim in the kiddie pool, etc. I'm happy that Danny and my family give me full support to make my own decision. They've seen the side effects and they are completely on board. In all of this craziness, their support puts a smile on my face, and with this drug that is definitely a difficult task to accomplish.

2011-08-25T17:01:00.000-07:00

Ok. I'm over myself. I hate complaining and yet I still do it. Here I am, I'm annoyed by myself.I'm alive. I have a kind, thoughtful man, a patient family and amazing friends that know when to distract me with laughter and when to just give a hug. Sometimes I have to remind myself that nothing is that bad in life until there is no life to live. It really snaps me back into reality.

Divalproex Is The Devil

2011-08-24T16:59:00.000-07:00

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).

Friday Harbor Photos

2011-08-22T18:35:00.000-07:00

My Brother (Kaal), Matt, Me, AJ & Larry

While I was in Friday Harbor, I had a chance for a quick visit with friends. Friends have been such a lifeline on this crazy ride. I can't say enough how much the love is appreciated. By the way, AJ is preggers! With TWINS!! A boy and a girl. I'm thinking the perfect names would be Jess & Danny. Or maybe they could use our middle names, Lynn and Wesly. Just a thought :)

Day 3: Broccoli Sprouts

2011-08-19T20:25:00.000-07:00

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.

Day 2: Broccoli Sprouts

2011-08-18T18:32:00.000-07:00

I just rinsed the seeds, so some of them are floating, but they'll eventually fall down to the bottom. If you look closely, you can see some of the seeds starting to sprout. Yay! My mom says it's fail-proof, but I've been known to kill house plants, even cactus, so I'm still waiting to see if this whole experiment works.

Here's a link to the item that I'm using to grow my sprouts. My starter kit was a gift, so I'm not sure where it was purchased, but the brand is Sprout-Ease Econo-Sprouter. It has instructions included. In fact, it has more than instructions, it has a pamphlet tucked inside the package. Talk about making it easy. I will have zero excuses if my baby broccoli sprouts bite it. Anyway, the flier thing has information for all types of seeds, measurements, growth times, etc. All you need is a mason jar.

*Click on the link above for Sprout-Ease or you can click HERE

Broccoli Sprouts

2011-08-17T16:09:00.000-07:00

I am officially growing my own organic broccoli sprouts. How fun is this!?! Allegedly, the process is very easy and we should have edible sprouts in 3-5 days. Year-round sprouts. This is fantastic!

I'm grateful to have Danny home. It's true what they say, with the right mate people DO live longer. We're eating ridiculous amounts of garlic, onions, and broccoli. We are two stinky partners in crime.

Here is a link to an article about sulforaphane explaining how it causes apoptosis (programmed cell death) in glioblastoma tumors (the most malignant and prevalent brain tumor around). I don't know the exact amount that naturalists use in treatment, or in experimentation for that matter, but I figure the more sulforaphane I can include in my diet, the less radiation or further treatment I'll need later.

If you're interested, you can google sulforaphane, and read how it kills lots of different cancer cells, not just brain tumor cells - it's very effective at fighting breast cancer cells too! Eat your broccoli. Seriously. Or, if you can't stomach enough broccoli, grow some sprouts like me! They're delicious on everything, salads, sandwiches, wraps, even pizza. According to Danny you can put sprouts on anything that takes toppings, "bagels, tuna....everything, pretty much."

I just remembered an article from months past that I posted, and I'm going to do so again, below. It's the specific information from John Hopkins scientists stating, "broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads." You can read the article here on my blog, or click the title for the actual website.

Cancer Protection Compound Abundant in Broccoli Sprouts

September 15, 1997
Media Contact: Marc Kusinitz
Phone: (410) 955-8665
E-mail: mkusinit@welchlink.welch.jhu.edu

Photo: Keith Weller
Dr. Paul Talalay displays broccoli sprouts.
2100x1585, 300dpi TIFF JPEG, (2.7 MB)

"The young sprouts that we have found . . ."

JOHNS HOPKINS SCIENTISTS have found a new and highly concentrated source of sulforaphane, a compound they identified in 1992 that helps mobilize the body's natural cancer-fighting resources and reduces risk of developing cancer.

"Three-day-old broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads, and may offer a simple, dietary means of chemically reducing cancer risk," says Paul Talalay, M.D., J.J. Abel Distinguished Service Professor of Pharmacology.

Talalay's research team fed extracts of the sprouts to groups of 20 female rats for five days, and exposed them and a control group that had not received the extracts to a carcinogen, dimethylbenzanthracene. The rats that received the extracts developed fewer tumors, and those that did get tumors had smaller growths that took longer to develop.

In a paper published in tomorrow's issue of the Proceedings of the National Academy of Sciences, Talalay and his coworkers describe their successful efforts to build on their 1992 discovery of sulforaphane's chemoprotective properties. Work described in the study is the subject of issued and pending patents.

A systematic search for dietary sources of compounds that increase resistance to cancer-causing agents led the Hopkins group to focus on naturally occurring compounds in edible plants that mobilize Phase 2 detoxification enzymes. These enzymes neutralize highly reactive, dangerous forms of cancer-causing chemicals before they can damage DNA and promote cancer.

"A comparable amount of chemoprotective activity . . ."

Photo: Keith Weller
Dr. Jed Fahey examines young sprouts.
1500x2100, 300dpi TIFF JPEG (2.3 MB)

Sulforaphane "is a very potent promoter of Phase 2 enzymes," says Jed Fahey, plant physiologist and manager of the Brassica Chemoprotection Laboratory at Hopkins, and broccoli contains unusually high levels of glucoraphanin, the naturally-occurring precursor of sulforaphane.

However, tests reported in the new study showed that glucoraphanin levels were highly variable in broccoli samples, and there was no way to tell which broccoli plants had the most without sophisticated chemical analysis.

"Even if that were possible, people would still have to eat unreasonably large quantities of broccoli to get any significant promotion of Phase 2 enzymes," Talalay says.

Clinical studies are currently under way to see if eating a few tablespoons of the sprouts daily can supply the same degree of chemoprotection as one to two pounds of broccoli eaten weekly. The sprouts look and taste something like alfalfa sprouts, according to Talalay.
Talalay founded the Brassica Chemoprotection Laboratory, a Hopkins center that focuses on identifying chemoprotective nutrients and finding ways to maximize their effects. Brassica is a plant genus more commonly known as the mustard family, and includes in addition to broccoli, Brussels sprouts, cabbage, kale, cauliflower and turnips.

"Man-made compounds that increase the resistance of cells and tissues to carcinogens are currently under development, but will require years of clinical trials to determine safety and efficacy," Talalay notes. "For now, we may get faster and better impact by looking at dietary means of supplying that protection. Eating more fruits and vegetables has long been associated with reduced cancer risk, so it made sense for us to look at vegetables.

"Scientists currently need to continue to develop new ways of detecting and treating cancer once it is established, but it also makes sense to focus more attention on efforts to prevent cancer from arising," he adds.

Fahey and Yuesheng Zhang, M.D., Ph.D., a postdoctoral fellow, are also authors on the PNAS paper.

Work in Talalay's laboratory is supported by the National Cancer Institute, philanthropic contributions to Brassica Chemoprotection Laboratory, and grants from the Cancer Research Foundation of America and the American Institute for Cancer Research.

Talalay is establishing the Brassica Foundation, a foundation that will test and certify chemoprotective vegetables such as sprouts to raise funds for chemoprotection research.

Danny's Home!

2011-08-16T15:36:00.000-07:00

Dan's home!!!!!! I was deep asleep in a nap a few moments ago, when I felt a little tickle on my foot. I jumped up, startled, sure that my eyes were deceiving me. He had driven the six hours all the way back to Wenatchee from Portland. Apparently, the training for Union Pacific has been canceled all across the western region.

I'm so happy to have him home, and yet disappointed that he again has to try a new avenue of work. The company called it "furlough" meaning he hasn't lost his job, but they no longer need him. He will be called back when work picks back up. The unfortunate thing is that there are people who have been working for Union Pacific for four or five years and they are also on furlough. Things are not looking good for this job prospect.

Also, as a side note, I woke up from a dead sleep last night because I realized I had not mentioned the fact the title of my article was not written by me. I would never have titled my work "Jessica: An Amazing Woman." I was so embarrassed (and honored) that I forgot to mention that fact in my blog yesterday. I hope people know that I'm not that conceited. It was a huge compliment, written by the editor, but I would never have assumed that I should be considered an amazing woman. Maybe I have an amazing story, but I'm just doing what most people would do in the face of bad news. Anyway, I just wanted to clear that up.

My First Article

2011-08-15T20:03:00.000-07:00

I'm back home after a week on the island (Friday Harbor). I'm sorry for not contacting people. Sometimes I become overwhelmed by going home. There are so many people that I would love to visit, and since I can't contact everyone, I often end up hiding out. Of course, I can't drive anyway, so that makes it easy to hide.

It's nice to be back. I just did my 40 minute workout - 30 minutes of running with 5 minute warm up and 5 cool down. I didn't feel like working out, but I told myself, now that I have a treadmill in my living room, I need to take advantage of the opportunity.

While I ran, listening to my MP3 player and watching the Jets come back against the Texans, I thought to myself, "I don't live to run. I run to live." What a crazy concept. I'm literally running to defeat the grim reaper. Of course, most people work out to be healthy and live long lives, but I truly feel a responsibility to exercise. While I was on the island I went for a few walks but I didn't run. I was scared to run on the road and go too far from the house. I was worried about having a seizure and not having someone help me. It's these little fears that make me frustrated. The seizures are real, in fact just as I was running on my treadmill a few minutes ago, I had to stop and get water because my right arm started slightly tingling. After I had some cold water it was better. I only had five minutes left of running so I just dialed down the speed. I thought it was important to finish my goal, to set a precedent. It's hard to know when to push and when to back off. I don't want to be a woman living in fear. I want to conquer mountains, not lay on the couch. At the same time, out of respect for everyone who loves me, I have to sleep a lot, and take it easy. Stress and sleep are the #1 killer and #1 healer for brain tumor function, respectively.

My life has changed so much, each decision, every activity. I have to weigh each choice so much, then re-evaluate. I can't just open the door and take off for a jog. Sorry if it sounds like I'm complaining. I know it's not the end of the world, I'm just trying to navigate the new rules of my life.

Earlier today, as I was watching the national news, a girl was talking about her addiction to sun tanning. She has skin cancer, and yet still tans. She was giggling, and shrugging her shoulders as if to say, "Yep, I'm crazy, but hey, I'm hot." I was shocked, and it really got me thinking. What are people really willing to do when they get diagnosed with cancer or other illnesses? Shoot. I'm afraid to color my hair because of the dye, and here's this crazy girl tanning with cancer. I wonder if beauty can be an addiction? That reminds me, I need a hair cut. I've only had two hair cuts since the brain surgeries. I'm nervous to have someone deal with the scar. It's such a private, graphic, intimate look into my life. It's hard to be that vulnerable sometimes.

On a side note, I my first article was published. If you're interested, you can click on the following link:

Island Guardian
http://www.islandguardian.com/archives/00004017.html