Day 4

Hi guys. I'm officially almost half way through my fast. Woo. Hoo. I do not know how people starve themselves, it feels so unnatural. I have had several questions about the research and efficacy of this fast/food restriction so I have decided to post the most informative research paper I've found. You don't have to understand the whole thing, skimming is almost just as good, either way I hope if you have questions or concerns this paper alleviates any doubt that I'm doing the healthiest thing for my body.

An added advantage to this ketogenic diet that I've been on for the past few weeks, and now the restricted style fast, is that I'm down to 142 lbs (starting point hovering between 150-155). I don't care so much about the weight loss so much as the realization that as each pound of fat evaporates from my body I am eliminating Hermie's pantry. Bwahaahaha!! So awesome! I have had much excitement in the tumor bed, and my right arm and hand are actively going in and out of sensation (mostly out). My right side is very much in tune with my tumor so any activity excites me. It's also scary because it could mean bad things, like growth, but I'm copying research, so it should only be positive results. I'm trying to tell myself that anyway :) I'm depriving myself of glucose and that's exciting! We know Hermie can't eat ketones, so that's a great start.

Anyway, there is so much about this concept, like checking blood glucose and blood ketone levels, etc., but I'm not going to go into it all. Hopefully this paper is helpful. This is definitely tough, but I want Hermie out of my body. I don't want to manage my life and just slow Hermie down. I want to live healthily, prosper, laugh and travel and have a day when my family can come together at a holiday or special occasion and actually be able to celebrate, to no longer have the black cloud hovering over all of us. Hermie's black cloud is ever present, and I'm sick of him. I try to remain positive, but living with a ticking death clock is very stressful. I want him gone.

Seyfried Et Al., TSO

Schedule of Treatment

Seattle is as beautiful as ever today. Just finished a quick jog around the lake, and it felt GREAT. I'm still jet lagged (only got 5 hours of sleep), but I'm starting to feel less and less punch drunk.

My MRI is tomorrow at 10:30 am. I'm nervous as ever, but so it goes, I know the drill and it can not be avoided.

Here is a main run down of my trip to Germany...

Day 1
Arrived Frankfurt and took the train to Gottingen (2 hour ride on the high speed)
Spent the night in Gottingen

Day 2
Taxi to Duderstadt (30 min ride)
Checked in at clinic for blood work and met with Dr Germany

Day 3
Leukephresis (2.5 hour allotted appointment)
Met with Dr Germany

Day 4
Hyperthermia
IV of immunotherapy (each IV included 1 billion)

Day 5
recover

Day 6
recover

Day 7
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 8
Hyperthermia (cancelled due to reaction)
IV of immunotherapy (cancelled due to reaction)
Met with Dr Germany

Day 9
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 10
Shot of my dendritic cells (13 million) primed my immunotherapy
Met with Dr Germany
Took taxi to Gottingen and spent the night in hotel

Day 11
Took high speed train to  Frankfurt and spent the night in hotel in airport

Day 12
Flew home

Each time I got an IV of my immunotherapy I got a slight fever, was dizzy, and exhausted. I slept most or all of the day after each shot. The hyperthermia was not tolerable so I only did it once. It caused massive headaches - incredibly severe. It was so much so that Dr Germany stopped the treatment. He said that the most  important treatments are the immunotherapy shots and the boswellia supplements. Both are scientifically proven to shrink astrocytomas.

From here I have the following shot schedule.....(each will be administered in NYC)


2013
February 13 (with Christel)
March 20 (with Libbey)
April ?
June ?
August ?
October ?
December ?

2014
March
June
September
December

2015
April
August
December

For years after that I only have to do three shots per year.

The first year is going to be disgustingly expensive, but hopefully it will all be worth it! :) Because I'm doing the shots in NYC (not Germany) they are around $7,000 apiece. Yikes! I already have February's trip booked. Oddly, it is cheaper to get a hotel for two nights one block from the clinic and a flight than just a flight alone. How crazy is that?!? The clinic gives dates about 4-6 weeks out, so I'll need to be flexible. The shots are always on a Wednesday, that's a guarantee.

Just talking about all of this makes me SUPER excited. I can't believe I'm doing this!! I'm still working on all the financing, but I know we'll figure it all out. One way, for sure, will be a second annual cherry sale. And this time I want to be there to help out and say hello to everybody (last year it was just too overwhelming). Dan and I are really excited to join in on the cherry fundraiser. And if it goes well we might do a follow up with the soft fruits (peaches, nectarines, plums, etc.) and then finally apples. It would be a total of three fruit sale occasions. I'm getting ahead of myself here, but it's all so exciting!! I feel really good about the fruit idea because you guys get something in return. I feel very uncomfortable just asking for money. It just doesn't make sense to me. We all work very hard for our money and I'm happier when I can give you a delicious treat. Okay, enough of that. I've obviously got jogging endorphins surging through my brain :)

Cheers to a great weekend everyone, and fingers crossed for a great MRI!

The Trick About Treatments

Hi Friends,

Good morning. Although I didn't sleep well, tossing and turning, trying not to vomit, I feel refreshed and excited to start the day. It's all because I have such wonderful friends who help me research my protocols, awesome neighbors who print up research for me and take me to my IV clinic, genius brain tumor fighters who help contact experts for more information, and my loving parents who find the best German clinics. I feel so connected, fighting amongst warriors who are battling by my side.

This morning, when I woke at 5:00 am, I was frustrated and exhausted. I'm only at 1,500 mg of the homemade sulforaphane pills and I'm barely keeping it down. The target dose is double that. I'm worried that I'm not getting enough to pack a wallop against Hermie. Dan keeps telling me that I'm doing the best that I can, and that I can only do so much. If I throw up it will ruin everything. I just don't know how I'm going to get the dose up. I always thought that I had a steel stomach, but now I realize that I'm nothing compared to my buddy who killed her astrocytoma. She is a crazy, amazing, insane warrior.

It makes me wonder, more and more, if I should seriously consider the dendritic cell therapy in Germany. It's expensive, and logistically tricky, but if I had endless funds I would absolutely hop on a plane and make it happen. The only reason that I haven't already started the treatment is because I'm trying to beat Hermie with more affordable tactics. The sulforaphane works, it has been proven by my friends, but dear God it is incredibly tough on your body. The plan has been for me to get up to the target dose of 3,000 mg per evening, and then sustain that for two months, then get an MRI to check results. If somehow Hermie continues to grow, we would adjust the protocol, and probably head on a plane and add dendritic cell therapy and hyperthermia to my treatment plan. Dendritic cell therapy is incredibly effective for brain cancer, and since I found the tumor specimen from my brain surgery, I know that they can target the vaccine to my specific cancer DNA.

The whole thing is tricky. I'm not sure how long I can go without sleep, and still keep healthy. Without sleep, constantly fighting painful intestines and discomfort, a person might go crazy. It's not much of a quality of life. Very tricky. But......not to forget.......it works. It comes down to one simple fact, "What are you willing to put up with to save your life?" Well, actually, it's not that simple, it's not just what would you do to save your life, it's also, "What are you willing to do to try and save money?" You don't want to go into debt $100,000 if you don't have to. If we were loaded, and $100,000 was just a drop in the bucket, I wouldn't worry about it. But since we don't have that kind of money, we have to be smart about the treatments that we choose. It's sad that tons of people die of cancer every single day because they can't afford the best treatments. It's sad, but it's just a ruthless fact.

When you have cancer you're playing a tightrope of deciding when to do the right treatments, can you push out the expensive options? If you push it too long you might die. You're constantly evaluating the risks (death), and benefits (saving money).

And, for the record, this past weekend I did get to do something fun! A group of girlfriends headed to Lake Chelan for a girl trip. It was very low key. The weather was cool, which was perfect for the hot tub. It was nice to get out of town. After vomiting (and such) on Thursday night, I took two nights off from the sulforaphane pills. It was glorious. It's fun to be one of the girls, goofing around, talking girl talk. I enjoyed pretending that things aren't so difficult. I loved not having to plan my days around pills & breakfast, pills & research, run around the lake, pills & lunch, pills, research & pills, pills, pills, pills, nausea & pain & fitful sleep. It's important to have some time to just be. Just exist.

Just The Facts

Sorry I've been MIA (I love you SoCal - I'll call soon!). Between the IVs, the homemade sulforaphane pills 6-8 times a day, researching the top experts on high dose IVs and dendritic cell therapy clinics, trying to keep up with exercise, corresponding with clinicians, and experts - like my friends who have beaten their brain cancer, etc., my head ends up spinning, and by the end of the day I fall into bed late at night, exhausted. Some days, like Thursday, I'll lose the fight with discomfort after hours of restless sleep, run to the bathroom and lose the homemade sulforaphane pills from both orifices. Yep, I know, it's disgusting, but sometimes it happens. The amount of pills that I'm ingesting, are very tough on my body.

I have a lot to say, and wish I had the energy and time to do a post every day, but I keep finding myself needing to research my current protocols to verify that I'm getting the proper treatment. I have to double check the reputations of my doctors, and the validity of their recommendations. I don't trust other people to have my best interest at heart - medical professionals anyway. I've been burned already, and I have to make sure that I'm getting the treatments that I'm paying for. Long story.

I am completely overwhelmed trying to verify things that I'm using in my protocol. For example, there is an internet article stating that high dose vitamin C can spread astrocytomas. I can't find the research to back it up though. In fact, I've found a researcher from Kansas University Medical Center who seems to be the leading expert on the subject and has the complete opposite opinion - with facts to back it up. She uses high dose vitamin C on all of her cancer patients, even when they're going through chemo or radiation. She has the research and facts to prove that it causes hydrogen peroxide, a pro-oxidant as apposed to an antioxidant which occurs in a low dose of vitamin C. Hydrogen peroxide in the brain alkalizes the tissues making the environment inhospitable - cancer hates oxygen, that's why exercise, meditation, and deep breathing are so beneficial). Anyway, everything is incredibly complicated, and I've learned quite a lot, but I still have so much to learn. The more that I find, the more that I have to research. For example, it's not good enough to just take 75 grams of high dose vitamin C, you also have to figure out what's being mixed in the solution, you need to know how long it takes to administer (you want it to take a certain amount of time, the faster it goes in the higher the dose it becomes or something like that - it's all about the number of drips per second). Anyway, it's incredibly over my head and I need to figure it out to make sure that I'm following the protocol that Dr Drisko uses. She's the KU genius curing cancers with this stuff. I want what the genius recommends. Duh :)

As for my curcumin IV, according to some friends who understand how to calculate body weight, and the amount in my IV bag, my brain is only getting 1 micromole. For this therapy to be effective I need to be getting much more than that, like ideally, 25 micromoles. So, now I need to talk to my doctor and see what the deal is. Are they trying to administer enough to get a good kill rate (as in, killing the cancer)? Are they being scientific or are they going by trial and error. It's frustrating. I have to double check all of their work. Sorry if I sound like a brat. I don't want to be a brat. I don't want to be difficult, and truthfully, I'm always nice to the doctors, but behind their backs I get exhausted and frustrated. I realize that they're all human and that they're doing what they think is best, but the problem is that they don't seem to be following proven science. They're going more by intuition, which I realize has a place in medicine, but I need facts. I want to copy people who have already beaten their cancer. If it takes 25 micromoles to effectively kill astrocytomas in my brain, I want 25 micromoles. It would be horrible if I was paying an arm and a leg, and then my knees and teeth, thinking that my treatment is killing little Hermie, when actually he is thriving. We have to be relentless about every aspect of these treatments, and research the crap out of them.

On a much more fun note, check out the card that my blog buddy Ann sent. Totally awesome!! Thank you Ann, for the card, thank you for purchasing Hope, and for giving ME hope. I appreciate it so very much!!

Fighting cancer is incredibly exhausting, mentally, emotionally, physically and spiritually. Although I'm pretty pooped, I believe that the energy that I'm expending is giving me great results. I have to pick between various things, it's a balance, because I can't do everything. I can't accomplish it all, but I know I'm headed in the right direction.

Hard Work & Healthy Distractions

Danny is going to kill me. I was supposed to tell my friends at the retirement home that I need to take a couple of weeks off from volunteering. Dan's worried that I'm overdoing it, and he wants me to focus on getting healthy. He believes that I need to focus solely on my new protocol, but while I was painting Margaret, Elizabeth, and Ruth's nails, I realized I just can't walk away. These wonderful women are so fun to be around. They keep me laughing, or at other times, we're just quiet. Volunteering feels like the only time that I'm not focusing on just me. It's wonderful helping someone with their walker, or opening a door. I love serving them juice, or painting their nails. They give me a reason to get out of the house every Tuesday morning, whether it's sunny or pouring rain. I'm afraid, that if I can't volunteer, I'll get depressed. I'm pretty terrified these days, and I need distractions. I need to help others. I need my life to not be just about me.

Yesterday was my first high dose vitamin C treatment. On Thursday, I'll return for IV curcumin and resveratrol. I'm going to be alternating those two IVs twice a week for quite some time. Unfortunately, the treatments are not covered by insurance. So, thank you to everyone who has donated money to help heal me! Thank you to Matt & AJ for Movember For Jess, and to those who have donated to the Islanders Bank account in Friday Harbor. Of course, thank you for the girls who created, and maintained the Hope for Jess website of my art work. Thank you to everyone who donated to any of the above fundraisers. You guys are AWESOME!! When it comes to medical care, hospitals are wonderful about payment plans, if need be, but when it comes to "alternative" medicine, you have to pay upfront. So, the money that has been donated to me in the past, has been incredibly helpful. I've used some to pay current medical bills, but then I got smart, and realized I needed to bank the donations for any kind of uncovered care. Because of your amazing donations, I'm getting full body, synergistic care that is not only healing my body, but also, directly targeting my cancer cells with a barrage of weapons. So, truly, thank you from the bottom of my heart!

Apparently, the high dose vitamin C, curcumin, and resveratrol IVs are synergistic with my low doses of artemisinin. They should all work together, along with my diet and supplements which have grown exponentially (shark liver oil, borage seed oil, fish oil, maitake, shiitake, lions mane, aloe vera jelly, boswellia, CoQ10, EGCG, D3 - I'm probably forgetting a couple) - and last but not least, it should all work with the sulforaphane chemo drink. I haven't been able to get started on the chemo drink, yet, unfortunately. I've ordered a yogurt maker, which should cook my chemo drink at exactly 100-110 degrees for several hours. It even has little cups, that sit on a tray. I'm pretty excited about it - the little cups on the tray will make it so that I can do a week's worth of drinks in one batch. Woop woop!! The shipment should arrive by the end of the week. Once that arrives, Hermie is going to FREAK. I'm pumped!!

Well.....I, mean, I'm pumped, and completely terrified. It's tough to keep my chin up and plow through everything, but I know that giving up would be ridiculous. I need to stay calm, ignore statistics about my cancer and effectiveness of the various treatments (30% success rate for one, 20% for another, etc.). I have to believe that these things that I'm doing are going to work together and heal my body. To put this much effort into living is risky because I would hate to be disappointed, but, of course, that's a horrible attitude to have. It's just not acceptable. That's not a winner's attitude. Maybe I need to do more deep breathing or something. Part of it could be that I feel disjointed from Hermie lately, I can't quite tell what's happening up there. I worry that he's morphing, which does tend to happen. Cancer cells don't like to die, and when they come into contact with things that threaten their livelihood, they like to adjust, change their dynamics and progress, so that the treatments are rendered ineffective. To outsmart the Hermies of this world, we have to keep the full frontal attack. It's exhausting, but it's the only way to win.

Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don't need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption.

I'm anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can't help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There's no point in stressing about the results, and yet, it's impossible to avoid it.

In my semi-stressed state, I've been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor's position in patient care. It has prompted me to reorganize my appointment. Let me expand.

I've decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we've attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we've always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we've been doing, starting from the beginning.

We will explain that we've been doing a researched based protocol. I'm going to tell him that the research has been conducted in the Bioengineering Department right here at the University of Washington. I will tell him that we're in contact with the researchers, and that we have a friend who has already eradicated her tumor with a combination of said treatment. This friend had the same exact type of brain tumor as mine, a stage 2 infiltrated/diffuse astrocytoma, even down to the lack of co-deletion of p19-1q (he will recognize the importance of that statement).

I'm going to tell my oncologist that this protocol is not invasive, it's cheap, and relatively speaking, it is without side effects. I'm going to tell the doctor that I need an oncologist that's willing to follow my situation, and understand that I am a unique case. I want someone who is on board, and excited about the progress and fortitude with which I'm going to fight this. I'm going to feel out this oncologist and see if he truly wants to see me cured with any type of treatment, or if he is more interested in western medicine's standard of care. My case is definitely out of the box, and I'm going to tell him that I'm looking for a teammate. By having this honest and open dialog, I think I will find out whether or not I will keep him on my team. It's all about how he responds to this discussion.

I'm excited and nervous to have this talk. I think it's about time I gave transparency to my doctors, but I also understand that it could go horribly wrong. It's a risk that I'm willing to take, though, it has to happen so that I can get the best care. They need to know what they're dealing with, and I need to give them the opportunity to truly help.

After Danny and I discuss my situation with my oncologist, we're going to call in my parents so that we can all review the MRI results. I feel like the first half of the meeting needs to be intimate, and private, so that the oncologist isn't overwhelmed by all of our faces, expressions, questions, etc. I want to look in my doctor's eyes and have his full attention. I am going to lay it all out on the table, and analyze his reactions. This could be an epic success or a tragic failure. Either way, in life, I'm reminded, you can't be afraid of the answers because it's the only way to move forward.

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.

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...

"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
 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 

The Time Will Come

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

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

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

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

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

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

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

It's Official: Brain Cancer

There's an argument in the medical world about brain tumors. A stage 2 astrocytoma often isn't called, "brain cancer" - it's just referred to as a stage 2 brain tumor. It's not until stage 3, does the world refer to an astrocytoma as malignant. That has always baffled me. I've listened to my doctors over the past year and half, listening to the voice fluctuations, the terminology, waiting for changes, trying to make sense of their words. This past appointment on the 25th was eye opening. It was the first time my radiation oncologist spoke of my brain tumor as cancer. Before that, he only discussed the "tumor."

I have brain cancer. Yikes. That sounds a hell of a lot worse than a brain tumor. I was happier with the brain tumor label. But he's right, I don't exactly have a brain tumor anymore, they removed the tumor and now I just have cancer cells all over the back of my brain. Some in nuggets, others invisible to the scientific eye. Frightening stuff.

So here's what we learned at the appointment:

Average growth of my type of brain tumor is approximately 4mm a year. From April of this year to October (this appointment), my brain tumor grew by 4.5mm. That was a 4.5mm growth in six months. Bad deal.

My radiation oncologist wants to start radiation therapy right now. Here's the information he gave about the process:

It will be conformal radiation - they will radiate the whole tumor area. It will take 5-6 weeks. It's a treatment every day except Saturday and Sunday. To start, they will create a mesh mask that they will form to my face. They will then lay me onto a table and screw that mask to the table so that I can not move. If I move, even a tiny flinch, during treatment it will damage a whole new host of healthy brain cells, killing them. The first appointment will consist of 30-45 minutes of my face being screwed to a table while they measure things. Then the following appointments will be a one hour block. They will strap me down and screw my face in to the table, then there's the 10-15 minute radiation with the beams. It will be 3-4 high powered beams going through my entire head from all sides, converging at the back of my head where my tumor mass is located.

Side Effects:
     Short Term:
          Fatigue, Edema (accumulation of fluid in the brain), Seizures, Hair Loss (very likely permanent in the tumor area, but they'll know for sure after three weeks into the radiation), Nausea/Vomiting

     Long Term:
          Second Malignancy (a second or more tumor in another area of my brain), Damage to Normal Brain Tissue, Memory Loss, Face/Neck Skin Pigment Change, Sight Loss, Language Loss, Movement Loss, Neuro-Cognitive Loss....all of these long term effects are permanent damage that will not come back.

The kicker of this treatment is that it will not add any time to my life span. None. Basically, they will radiate the entire circumference of my old tumor, and add a buffer zone where they will kill healthy cells around the area to try and kill any invisible tumor cells in the outside area. The biggest concern in my mind is that my tumor was massive. Therefore, the buffer zone around my tumor area is quite large. That's a lot of damage to a lot of healthy cells.

The doctors say that the long term effects are permanent. They believe that radiation, right now, is the right choice because they believe that all of the short and long term effects will happen anyway as the tumor grows, so they believe that zapping it right now may slow some of the side effects. I guess they're expecting me to eventually have no vision, be paralyzed, have limited speech, limited cognitive abilities, and have to deal with a second or third, or however many more brain tumors in the rest of my head. This is crazy.

I keep thinking and thinking about this radiation and it just feels wrong. I just can't do it. I can't damage my brain, and my body like that. My radiation oncologist already doesn't like me because I refuse to get back on my anti-seizure medicine. I try to keep it light and tease him, but he is unimpressed by my chutzpa. I figure, it's MY BODY. It's MY BRAIN. It is NOT his brain. When I tell him I'm not going to do it right now, I know he will act like it's some grave mistake, but you know what - it's not his tumor. This is my life, and he can shove it. Sometimes I feel like he's drooling over my brain, and that's creepy. He has bought into the "standard of care" doing radiation, and I believe that there are other answers.

So, instead of jumping on the killing machine, I've started a new alternative therapy. Some of you might think I'm crazy, but that's ok. It is widely known that our FDA is hand in hand with pharmaceutical companies, and that they fund most research. That makes it incredibly hard to get valid alternative treatments recognized in the US. If there's no money in it, it's hard for hospitals and practitioners to jump on board. It's just our system.

I'm going to find my own way, right now using artemisinin (the main ingredient in anti-malarial drugs). If this doesn't work, I will try something else, maybe the Burzinski Clinic in Houston. I will not kill my body. I have been very fortunate to have a brain tumor fighter contact me to share their fight, and success of stopping, shrinking and then killing her brain tumor. Her husband has joined my fight to help me beat this. They've shared their MRI's, their techniques, their recipes, and their research. It's fantastic!


Here is what I'm doing:

• At breakfast or lunch I have 500mg of vitamin C, 400 units of vitamin E (with mixed tocopherols), and  a D3 vitamin
• I stop eating at 4:30pm
• Four to five hours after eating dinner, on an empty stomach, I take 2 capsules of Artemix and 4 capsules of Butyrex (I might end up adding a ferrous iron supplement too, but I need more information). 
• Between dinner and the pills, Danny and I take a quiet, relaxing walk, or visit, or watch a movie. Or I'll take a bath. I try to use that time to decompress. 

The premise of this treatment is that the artemix (consisting of artesunate, artemether, and artemisinin) binds to the highly iron filled cancer cells and kills them. 

Obviously, I'm not a doctor, and I'm not recommending that anyone do what I'm doing. If you're interested in the research let me know. I'll try and figure out how to add a page to my website and include all of the reasearch documents. I'm not going to include the MRI's, but the research alone should impress.

When I received the results of this past MRI I was in shock for two days. Then, I went into a deep depression. I would wake up and head downstairs to my favorite chair. I wouldn't get up until my bladder hurt so badly I thought it would explode. I couldn't get myself to the shower, I didn't want to eat, I didn't have the energy to talk to anyone or get on the internet. I was scared if I talked to friends I would just lose it and cry uncontrollably. So, I isolated myself. Things are looking up though. I'm happy to say that I'm on an upward swing. I was so scared, and it seemed so unreal, but the more resesarch I read about the artemisinin the more hopeful I become. It's an amazing cancer fighter for many, many types. Maybe, after all, I will cure this. Maybe I will be that 1%!

Radiation?

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

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

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

Sorry if I don't answer the phone, or emails. I need to absorb this. Dan should be home from work soon and we'll need space. Thank you for understanding and thank you for all of the love. I appreciate all of the texts and emails, and posts on the blog. I'm floating above myself, blurry with confusion. What do I do next? What is right? Can I win? Can I beat this? I'm not going to give up, but I do need to regroup.

Low Glucose?

It's amazing how not being able to drive will slow ones life. The past two days I have been sleeping and sleeping. Well, sleeping and bathing. I'm almost rested, and very clean. Yesterday, I took both a shower, and a hot bath. Water conservation fanatics would curse me.

Although the second seizure was a shock, I'm feeling better.

What does one do when their body starts doing weird things? Obviously...Goggle it! At least, that's what I do. It's how we found out about the brain tumor in the first place. Thank you internet!

According to the National Institutes of Health
Causes of seizures can include:

• Abnormal levels of sodium or glucose in the blood
• Brain injury (such as stroke or a head injury)
• Brain injury that occurs to the baby during labor or childbirth
• Brain problems that occur before birth (congenital brain defects)
• Brain tumor or bleeding in the brain
• Dementia, such as Alzheimer's disease
• High fever
• Illnesses that cause the brain to deteriorate
• Infections that affect the brain, such as meningitis, encephalitis, neurosyphilis, or AIDS
• Kidney or liver failure
• Phenylketonuria (PKU), which can cause seizures in infants
• Use of illegal street drugs, such as cocaine or amphetamines
• Withdrawal from alcohol after drinking a lot on most days
• Withdrawal from certain drugs, including some painkillers and sleeping pills

After trying to find the cause of my seizures, Dan, my parents and I have isolated the similarities between the episodes. There are only two bullets from above that work. Obviously I have a brain tumor, and the second cause is abnormal levels of glucose in the blood. Both days that I had seizures, I skipped breakfast (I know, I know, very stupid move but I was busy) and drank 2+ espresso shots.

My whole life I have been irregular with my morning meals. I've never had a problem skipping breakfast, or drinking lots of coffee on an empty stomach, but now, my life is changing, my health is different, and what used to work does not work any longer. I am not the iron horse I once was. Again, I need to be more gentle with my body.

At every turn, with this tumor adventure, my body is making me slow down. If I don't listen to what my body needs (like more glucose), my body makes me listen.

Note to self: Eat breakfast and keep a regular eating schedule. Maybe it's time to revise my diet a bit.

MRI & Seizure Changes

Here we go, I borrowed danny's fancy phone, and i'm punching keys like a two fingered sloth.
The mri shows some new growth. They're not going to radiate right away though.

Due to the seizure, my license has been revoked. I can not drive for six months. I have to show zero seizures for six months. If i have one, the timeline starts over.

I will be on antiseizure medicine for the rest of my life.

No swimming either. I have to get used to having all kinds of limitations.

I feel bad. This past weekend danny and i signed our marraige certificate just in time for my body to start falling apart. Now i wont even be able to go visit him.

Things can sure change quickly.

Maybe i need a Rascal, you know those little wheelchairs? I don't know how else im going to survive.