Tuesday, January 31, 2012

Pray For RJ

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! 

Monday, January 30, 2012

Am I A Binger?

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.

Friday, January 27, 2012

Burnell Family Visit

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 :)

Thursday, January 26, 2012

Her Charm

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.

Tuesday, January 24, 2012

Smart Bomb

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.

Sunday, January 22, 2012

Warning: Graphic

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:

Friday, January 20, 2012

I Always Bounce Back

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

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

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

Thursday, January 19, 2012

Can't They Feign Interest?

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

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

Wednesday, January 18, 2012

Crushing Dreams

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

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)

Tuesday, January 17, 2012

My First Video Blog

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...

Sunday, January 15, 2012

"Minimal" & "Stable"

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

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

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 

Friday, January 13, 2012

Damn it.

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

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.

Thursday, January 12, 2012


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!

Wednesday, January 11, 2012

Hot Dogs For Seagulls?

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!

Tuesday, January 10, 2012

Sniffle...I'm Jessica

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."

Monday, January 9, 2012

No More Fishy Blender

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

Thursday, January 5, 2012

Gotta Get That Bus App!

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

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.

Wednesday, January 4, 2012

Abdomen X-Ray

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.

Tuesday, January 3, 2012

Hungry Girl

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!

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)
Bok choy

Thanks for the help! 

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