Pushing Boundaries

Yesterday, for my final high dose day, I went a bit aggressive. I was overly ambitious, and I've been paying for it ever since. Instead of a 4-4-4 twice a day, I did 6-6-6. Last night, after ingesting the pills, I was so nauseous I could barely sleep. I tossed and turned for hours, until midnight when I went to the bathroom and dry heaved for a bit. I'm convinced that part of the issue is that I'm so sick of milk, it's truly causing me major problems. I'm SO HAPPY to be done with my artemisinin until after the MRI. Phew. I can now focus on eating healthy. Well, that is, as soon as I'm able to eat. My stomach is so messed up that everything makes me nauseous. I've been drinking pint after pint of water, and it has been helping to sooth my poor little body. I always have a tendency to overdo things. It's one of my worst traits. Like cookies, if one's good then five must be better - just like my pills. Ugh. I can't wait to feel better. It was so discouraging to see nice weather outside, and yet not be able to go for a walk or a run. Instead, I've been huddled up with my insides in knots. It was nice taking a long nap, and I'm hoping that tomorrow after more sleep, I'll be back to normal. I'm always pushin boundaries and this time I definitely blew it. Live and learn, I guess.

Just Doin' His Job

I'm on day two of sprout growing. I drained the seeds and tomorrow, I expect to see just a few sprout faces poking out.

I can't believe I only have three weeks before the MRI. This is such a huge time that happens just four times a year. I've been much more lax on the diet, soon we'll find out if my wayward ways have fed little Hermie. I keep reminding myself, each time I get tense, that it has been important for me to be able to have pizza, ice cream, red wine, sourdough bread, and other fun treats in order to test the limits. I need to see whether it's important to be perfect with my diet, or if just maybe, it's okay to eat some fun non-nutritious foods. It's scary, of course, but man has it been fun :) and delicious.

Tonight is supposed to be my final high dose artemisinin night until after the MRI, but I've decided to extend one more day and up the dosage to counteract the decrease of absorption that goes with the high doses. I'm doing a final kick in the pants to poor little Hermie. He's just been dancing around in there, gobbling up whatever I've been giving him, and I don't think he's going to see it coming. Poor guy...I almost feel bad for him. He's just trying to survive in a tumor eating human world. Just doing his job in life, which of course, is death. Can't really blame him for trying. Adios little Hermie! I wish I could say that it isn't personal, but I'd by lying.

Stank Milk

This morning, about an hour after eating my high dose pills, undergoing serious stomach discomfort, I started contemplating the odd texture of the milk I used to wash it all down. A flash hit my brain and I realized that I pulled from the old milk carton, not the brand new one that we just bought.....oh God, seriously, yes, those were weird chunks and swirls of texture that should not have been in there. The smell wasn't very bad, but I've been so disgusted by milk in general that I just thought it was my natural distaste after having to drink whole milk every morning and evening three days a week. Yes. This. Girl. Drank. Stank. Milk. Wait for it....twice. I did it last night and didn't understand why I felt so sick while I was trying to fall asleep, then again today. I was so cranky that I didn't even want to go to the retirement home. I got over it though, and while I walked to volunteer, the fresh air helped. I am such a goober. Who drinks stank milk? This girl. I'm so out if it. I guess I'm just used to drinking disgusting things, and I go with it because usually it's a rank drink that's good for me. Boy did I blow it. I seriously get shivers just thinking about it. When I relayed the story to Dan this evening, while we drove to the gym, he literally had to ask me to stop because he was going to lose it. Rotten, stank, swirling with chunks milk is a universally disgusting thought. Ugh. Yuck. Whole milk is thick, but not THAT thick. I should have known it was wrong. Gross. 

Today I started a new batch of broccoli sprouts. They're very hard to find at stores because of the whole salmonella poisoning issue. Anyway, I haven't been able to grow healthy sprouts in my new home because they seem to get moldy even when I rinse them twice a day. I'm hoping that rinsing them three times a day will keep them growing healthily. The overnight growth may be a problem, but it's worth a shot to see what happens. 

 

1 Tablespoon of Seeds

Saint Patty's Day

Sometimes people just get sick. It's tough when you're dealing with cancer to not read into things too much - like your immune system. Luckily for me, my friend Meghan has been sick for the past week after hanging out on Saint Patty's day just like me. She was just as immobile, and oddly, her sickness made me feel so much better :) Once I realized she was in as bad of shape, I actually felt completely normal which was fun. I was just a sicky, living in a sick world. Here's a few photos from the infamous day...

Meghan, Julia, Me, Lauren

Lo & Megs getting me camera ready

Ta-Da!

My partial Irishman

The holiday was a blast. You can't beat Saint Patty's day with a group of close friends, our favorite Irish man, and all of his Irish buddies.

Good luck getting a photo during the Irish rugby game...

Michael at least gave us his face, but his eyes gave him away :) 

Here's a funny story about Saint Patty's day......We celebrated in downtown Seattle, at an Irish pub called Fado. At one point, I went to the ladies room (as one does from time to time). As I was washing my hands, and checking to make sure I didn't have anything in my teeth (or stuck to the bottom of my shoes), a woman my age started smiling and said, "Oh my gosh. I swear I'm not creepy, and you don't know me, but I'm a friend of a friend of yours and I read your blog!" She was absolutely hilarious! It was amazing. She told me that she loves reading my blog because it's a true story. The girl, Meghan or maybe it's Megan? I'm not sure on the spelling, but regardless, she was incredibly sweet, and it completely made me feel so wonderful. What a huge compliment! Danny teased me later, because I made her come over and meet him, and he said that I hugged her about three different times. It was just such a thoughtful thing for her to come up to me.

What an honor. It's amazing. I'm still completely touched. That is something that I'm going to swirl around in my mind to make me smile. Everyone needs a few of those little memories for a bad day. A gift that you can pull out to cheer you up. Life is so full of fun, and I love that we're all intertwined, integrally interconnected. It's beautiful. I'm so lucky!

Four full days of being bed ridden. Sad little immune system. Even bingie is sick. He threw up on our comforter and ruined it. Rough week in the Carroll household as Dan has been working nights, then days, now he has night class. We're holding on, but the view isn't pretty. Hope you all are doing much better than we are!

Insult to Injury

My reindeer pajamas

Too much fun for Jess this weekend. I awoke with a temperature of 102. To add insult to injury, I received an email this morning from the Bone Marrow Donor Program of Puget Sound stating that I am unfit (my word, not theirs) for donation and will be placed on reserve for a year pending a clean bill of health. Ouch. They don't want my blood, platelets, red cells or my marrow. That's rough. I understand, since I technically have cancer, but it still sucks. It has always been a dream of mine that one day I would get a phone call and be able to save someones life. I figured, I already had what other people are dying to get (literally), healthy tissues and blood - why not share, but now I'm unable to help. If you're so inclined to stand in my place, please sign up to be a donor (link for Seattle area). 

Life Is Precious

Sorry for the grainy photos. Dan and I were just walking, and passed a horrible, horrible accident on Green Lake Dr. It looks like they had to cut the person out of the car, through the roof. Man. That vision will sober you up quickly. Life is so precious. Those poor people were probably just headed home after a long day, after a long week, exhausted, probably excited to do something fun this weekend, maybe including some green - either a hike or a run or green beverages, who knows. Life is precious, and we never know what lays ahead.

The truck in the photo above was part of the accident. Lesson: Big vehicles are safer. Some people complain about gas guzzling trucks and SUVs, and yes, there's no argument that they aren't as good for the environment, but hey, when it comes to your life....

If you pray, please pray for them. How scary, and shocking for them. I wish things like this didn't happen.

Balancing DHA & EPA

Vegetarian DHA From Algae (200 mg ea pill)

Bushel of Purple Kale
Banana
4 Tablespoons Fish Oil

Breakfast. Sorry for complaining yesterday. Sometimes I just need to barf out my feelings. I'm doing better though! Here's my breakfast drink. It has four tablespoons of fish oil, and I've read that it's important to balance out the DHA and EPA in your diet to maximize the effects against inflammation (a promoter of tumor growth). One tablespoon of my fish oil has 500 mg DHA and 800 mg EPA, so I took 6 DHA pills (200 mg each) to even out the four tablespoons. Not a delicious breakfast by any means, but hey, I downed it with a verbal toast to Hermie, swallowing the pills like fishy candy. The pills are vegetarian, but they taste and smell like fish. It's weird.

Anyway, little by little, Mr Herm is being knocked down by my arsenal of tricks. I have to believe that.

Dan and I were talking about it last night, as we were falling asleep in bed, we honestly have no expectations for the next MRI. It could show a massive decrease in tumor cells or an increase in tumor cells. We have no idea. That's the thing, you can be hopeful, but if I was to feel too confident I believe it would be incredibly dangerous - it could make me complacent. No one wants to be disappointed.

Grumpy Girl

When I'm in a bad mood, I figure it's a great time to get out for a run. Today was no exception. We were a perfect pair, Mother Nature and I, both cranky. The wind slapped my face over and over again like a cold fish. The rain drops soaked me through every article of clothing, all the way down to the toes.

I'm not sure why I'm in such a bad mood. I guess I'm caught up in the seriousness of having cancer. This can happen when I'm on strict mode with my diet. It's wonderful to eat supremely (why does that word make me think of pizza) healthy, but I hate the fact that my food sins literally are punishable by death. It would be nice if my food sins were just punishable by fat. At times, it's an overwhelming feeling.

It's weird that almost two years ago I was diagnosed with my brain tumor. And almost unimaginable that I have been living in three month spans ever since. My life is completely dictated by my three month MRIs, scheduled just to watch my cancer grow (Except for the last MRI. Phew!). Oddly, I find that I've been appreciating life, the daily gifts, but the big picture is lost. It's wonderful living in the moment, but there's something about having long term goals. I realize that life changes for everyone, that it's difficult to plan, but it's different when your survival is literally up in the air, and constantly shoved in your face. It's a lot.

Tuesday Night's Dinner

Tonight's Dinner

Time To Work

Started playing with my pills this morning. Not exactly the beer can towers of college days. Yesterday, at the gym, I weighed myself. YIKES. In January at my last MRI I weighed 144. Now, I weigh 150. I guess I need to take this a little bit more seriously. It was quite the wake up call. Dan and I talked about it for quite a bit last night. We are very strict right now, this whole week I'm on a plant based diet (other than a glass of milk each morning and evening for pills). We're going to take Saturday off to celebrate Saint Patty's day with friends, but come Sunday we will be back on the whole foods diet of months past. We will not be cheating again until after the MRI. It's been a lot of fun, but it's time to get back to business. I have to say, when I stepped on the scale and had to move the little black weight over further and further to the right, my stomach pulled into knots and my sweat pores started tingling. I was in shock.

Oh well, I can get this back on track. I love taking a week or so of only eating plants. You can eat whatever you want, as much as you want. It's actually a lot of fun. That probably sounds crazy, but it's fun to change it up. Damn. 150? Ugh. Jessica Lynn. I'm not so upset about the numbers necessarily, it's more the fact that any extra weight feeds Herm. That's always the kicker. But, each day, each meal, I decide what I'm going to put in my mouth and each step is a choice. I'm ready to conquer this next month and see what's going on in my brain at the MRI. I have to relax and play a little, but now it's time to work.

Not Mutually Exclusive

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

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

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

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

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

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

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

More Hope

I received an email from my friend Meghan this morning. You might remember her from the WPIG art auction, or from surprising me by buying my art donation named Hope that she then turned into a fundraiser for my medical funds. Anyway, Megs emailed me and asked if I would be interested in donating one of my prints to an art auction that raises funds for uncompensated care at Seattle Children's hospital. How awesome is that! Meghan is so connected, and she always comes up with the best ideas.

HOPE

When I painted and donated to the WPIG auction, I created a variation of one of my favorite original pieces. When it came to naming it, I sat in a chair and stared at the completed canvas. The first word that came to my mind was HOPE. Little did I realize that it signified hope not only for me, but also for those benefiting at Ryther (the organization benefiting from the WPIG auction), and now hopefully - there's that word again - it will benefit some children in need of medical care. I'm honored to get to help, and thank you to Meghan for facilitating that. Hope is such a beautiful word, and to me it signifies such a variety of emotions like perseverance, belief, happiness, and solidarity.

Here's some information if you want to attend the second annual Bids For Kids, silent and live auction. Somehow, I just know it will be a lot of fun!  

Click on the photo to be directed to the website

Macular Degeneration

Sorry the above photo is so grainy, but I didn't want to disturb the sleeping birdies so I zoomed in. If you look closely the female has her eye open and she's watching me, probably deciding if I was a threat. I wish I could swivel my head and tuck my face into my feathery back. It seems very comforting, hiding from the world. I think I would like being a duck at Green Lake. As far as I've been able to tell, it seems like a pretty awesome life. 

That picture was taken on my walk to the retirement home this morning. Tuesdays are my favorite! Today, along with my usual Margaret, I got the chance to paint Lucy's nails. She's 89, and such a sweet and interesting woman. She moved to Seattle in 1946, migrating from her small Minnesota hometown of 2,300 people. She reminded me of two of my favorite people Rich & Andre who moved from Minnesota. Unlike Lucy, they still have their awesome accents, well, at least Rich does :) Lucy moved to Seattle to do bookkeeping for Boeing during the war. I love Lucy and Margaret. I also had the chance to go to Ruth's room and touch up a couple of her nails. Ruth didn't have the energy to walk to our usual meeting place so I knelt down while she relaxed in her rocking lazy chair. She was looking classic in white slacks and an American flag sweater. These women always look so handsome.  

The highlight of my day, though, was when Lucy asked if I was attending high school. I started laughing and told the ladies that I'm 31. They couldn't believe it! They kept going on and on about how young I look, until Lucy finally fessed up and admitted she has macular degeneration. Then we all busted out with uncontrollable laughter. Oh lord, these women are so funny! Seriously. They're such a treat!

Big D Turns 34

Dan tuned 34 on Saturday, and above are the remnants from the celebration. It's fun having sweets around the house, they're so pretty! Baked goods are so feminine. They make me infinitely happy. I thought I'd be all over them like a little bunny on carrots, and that I'd have to throw them away, but oddly, after sharing two cupcakes on Saturday, I had my fill. Now, I'm sending Dan to work each day with goodies for the other boys. I used to bake all the time, but stopped when I got the big C. Ever since I learned that sugar literally kills, I've cut back in a big way. It's awesome having the cupcakes and brownies around the house because it makes me feel warm, that our home is cozy and inviting. There's something about baking that just feels right, even when I've read that it's so wrong.

Things are good over here. Like I've mentioned before, we've been more relaxed about my diet which has been a lot less stressful. I'm very curious to find out at the next MRI if the high doses of artemether & sulforaphane cancel out my relaxed diet and still shrink old Hermie. It's all such an ebb and flow, there's never definitive answers until each MRI. We're walking in uncharted territory for the most part. I'm of the mindset that if Hermie grows, it will be because of my lax restrictions of sugar (sweets, wine, carbs, or things of that nature).

We were incredibly hard core from October until January. It was precise, and calculated. I can only function like that for a short while. I have to be bad, and live like a normal human from time to time. Anyway, we'll find out if I've been enjoying myself too much in about six weeks. It used to unnerve me, drive me nuts, always worrying about my choices, but luckily, with this type of brain cancer I have a lot of leeway compared to the further stages. According to the World Health Organization, "Individuals with grade 4 astrocytoma have a median survival time of 17 weeks without treatment." Jeez. Seventeen weeks is just past four months. Death? Yikes. If I was in that situation I wouldn't even play around with cheating on my diet, but since I'm not, I'm living my life allowing some happy foods, not just eating for health, but also happiness. It has taken me a bit to relax, and I might find on April 19th that it was a mistake, but hey, if I don't try it I'll never know.

I feel confident that I can cure my brain cancer, even though it isn't often accomplished. I probably sound crazy to some, maybe even to most, but just because others have heart breakingly failed, at no fault of their own I might add, doesn't mean that I will. And when I do beat this, I will find a way to dedicate my life to help others survive.

Partners In Crime

This morning started with our pills. Mine included 12,000 mg of bioavailable curcumin and 6 bioperine (black pepper for absorption), Jess's included 1,500 mg of biovailable curcumin and 1 bioperine. Jess is doing the baby version of mine so that she can understand what I've been going through. She's great! And obviously crazy :) 

Next, twenty minutes after the pills we took our first big gulps...