Thursday, May 30, 2013

Buphenyl (Sodium Phenylbutyrate)

I'm embarrassed. Remember back a few months ago when I was ranting about that very expensive drug that treats gliomas? (As an aside, it's the same drug that Dr Burzynski uses to create his antineoplastons.) Well, apparently, I'm one of the lucky ones that can get it. I kind of assumed I couldn't because my doctor said it was a long shot. So, like a defeatist, I didn't bother to even check with my insurance. Yesterday, as I was reviewing my lists of recommended supplements and recommended medications, I decided to bite the bullet and not be afraid of hearing, "No".

After several phone calls, lots of hanging out on hold, it looks like Buphenyl (sodium phenylbutyrate) is mostly covered. If you recall, that is the prescription medication that is for people with urea cycle disorders (UCD); it is also used for off label use to fight various cancers.

After a little bit of web surfing I read that Aetna health insurance (not my health insurance - I'll be getting it though Blue Cross Blue Shield) goes as far as covering Buphenyl for UCD and also acute promyelocytic leukemia and malignant gliomas. Wow! The problem? As I try to find more proof that Buphenyl is effective to treat malignant gliomas, I can't seem to find it. There has been one complete response that I've found, but that's just one person. Shoot - that result could be as simple as tumor genetics.

I feel dumb because I wanted this drug, and now I wonder if it's actually worth the side effects and effort. I'm posting the study here for my other brain tumor fighters so that you guys have the info if you're interested...

There's more out on the web, but not much. Please feel free to email me ( or post links in the comments section with any information you find - or opinions. I'm not a fast responder to emails, but I read all of them and appreciate the help.

Tuesday, May 28, 2013

Winston Salem in Pictures

Downtown Winston Salem

My new favorite bug. They're red!

Checking out the gorgeous Wake Forest campus

My favorite flower among the gardens near campus. 

Cutest farmers market in aaaall the land.

It's green. It's lush. It's absolutely perfect.

In the heart of the Arts District. My favorite area!

Setting up for live music and an art walk. This town is so cute!

A proper send off near the rental car return.

I buckled into our flight to Charolette and noticed a lucky quarter next to my foot. Sweet!

The view while I contemplated all of my good fortune over the course of our trip, really absorbing the implications of this new endeavor.  

Arriving into true humidity. It's called rain. But clearly, Mother Nature welcomed us back with a smile. 

Fixing The Chinks

Wake Forrest was such a unique trip. We would never have happened upon the destination, but while we flew over the Rockies, I thought about how different my life would be if I wasn't able to explore the opportunities that pop up in my life. The majority of my success, the ability to jump at cancer fighting treatments, or subsequent programs, lay within the hands of those whom I have loved so dearly, who have supported us emotionally - but above that, financially. I am blessed beyond measure. Dan and I have dedicated our lives to creating our own mini think tank, to include the best doctors for my care. We will fight this scary adversary with support from all angles, and now we're able to include Lindsey, my strategist who will help me understand the medical world, the research, the opportunities for treatments, and I also have the Take The Fight (TTF) resources of Andy, Dineth, Lawson, and so many others who are working toward their undergraduate degrees while literally changing the world of cancer care. It is thrilling!

As a basic recap, Danny and I flew to Winston Salem, North Carolina to meet with a group of students at Wake Forest University (overseen by David Warren who was out of town helping his father fight his glioblastoma). It was for a new program called Take The Fight which will subsequently spread across the country to other universities, and further expand around the globe. It pairs students, one-on-one with cancer fighters. The student uploads all of your medical records onto an online database which is easy to access and modify for those on the TTF team and yourself. You also receive a briefcase of hard copies of everything (even all of your MRIs). Both of these systems (the briefcase and online database) make it easy to continuously research and update your plan, whether it's nutritional choices, supplements, clinical trials, research of the disease or upcoming FDA approved treaments, or whatever you personally need to fight your best fight. Your strategist can also join you in appointments with your doctor which is amazing. While we were at Wake Forest Baptist Hospital meeting with Dr Glenn Lesser a neuro-oncologist, we had two take the fight strategists observing and taking notes. Later, the information from the appointment was uploaded onto my medical drive so that I could access it, and they researched a clinical trial that was mentioned and are following up on some upcoming research that was mentioned. It was amazing! Since I will be doing this program long-distance, my situation will be unique. I have plans to ask all doctors as an appointment begins if I can record the session (which I have secretly done in the past...oops...that might be illegal). Also, another option, if my strategist is available, perhaps I can have my computer ready with Skype so that she can be "present" at the appointment. There are lots of options, and I feel, already, that I am being supported, that I'm moving in the right direction. I feel more organized, and hopeful.

I will continue to research and adjust my strategy. I will work hard and utilize this opportunity, and I feel really fortunate to have a teammate, my new buddy, my partner in crime Lindsey to bounce things off of, and learn from her fabulous mind. I am so lucky to have my brilliant new friend to help me navigate the medical world more thoroughly. She is a stunning 4'11 package of sweetness and force with a gorgeous laugh and absolutely fabulous demeanor. She has her eyes on becoming a surgeon (she comes from a long line of various doctors), and just from spending time with her I can tell she would be just the type of person I would want working on my body. She is thoughtful, kind, precise - clearly brilliant. She is just the cutest little thing, with such an amazing mind, and drive. I feel lucky to know her, even outside the whole TTF thing, and I can't wait to be following up and cheering her on along the way!

Thank you for all of the financial support, to our home town of Friday Harbor, our late home of Wenatchee, our current home of Seattle, my old home in Fort Wort, both Dan's mother's and my parent's home of West Seattle, the readers of the blog, our friends in Canada, my family in Poland, our buddies in the Middle East, and everyone else whom I embarrassingly forgot. I just feel insanely fortunate. I'm not exaggerating, I think about how grateful I am every single day. Thank you for the donations. I am a lucky woman, to be supported by so many. Dan has said so many times that he doesn't care if we spend everything (easy to do), mortgage everything (we have nothing of value - we rent a place and use a beater vehicle), he does not care, we will exhaust every option, every avenue until we find a way for me to be healthy. The guy is amazing. I'm sure you guys get sick of me going on and on about him, but he really is the most astounding support as far as a husband goes.

Life is about chances, it's about circumstance. Then, after that, it's about what you make of it. I am enjoying life every single day. Sure, I get cranky. Then, I look at Dan, or call a friend (if Dan's not home) and find a way to laugh and get over myself. Life is just glorious. I probably sound crazy, because I know life can be dismal at times too, but Dan and I have dealt with lost jobs, having to sell vehicles, no money, plummeting credit (really gets me in the heart), debt, missing out on creating a family, and so much more just because of cancer. Cancer sucks! But I have Dan. And my family. And I have friends. And the support of my blog readers. And now Take The Fight, and Lindsey. I am energized with this new program. The way that it's organized helps to show the areas that I'm lacking (ex: concise supplement schedule). I've already uploaded a few new notes/research from my little kitchen office that I can share with Lindsey. It's exciting to have this running dialog with a buddy who is medically minded. I mean, literally, it's in her blood! With Take The Fight I'm able to fix the chinks in my armor, so that I can fight as a real warrior. This is truly changing my life.

Sunday, May 26, 2013

My Life is Changing

...and soon, you'll see, the medical world is evolving.

No one fights alone
The bravest patients
The brightest students
Not for profit, for survivors
We play to win

More organized.
More informed.
More engaged.

A new way of fighting emerges

Fight Smarter.

The world's most hands-on cancer non-profit

It's not a charity. It's an army.

Saturday, May 25, 2013

Thursday, May 23, 2013


I've probably said this several times, about several places, but Winston Salem is definitely God's country, one of the most lovely places on Earth with matching people. We are having a BLAST.

The appointment with Dr Lesser went smashing. He and the radiologist believe there is no reason for concern. Sweet! It was wonderful meeting with Dr Glenn Lesser, he is open minded, clearly educated and interested, helpful with resources and just great to speak with. Definitely an ally in our corner.

Most of all, though, has been the interaction with Take The Fight. My sweet Lindsey was out of town for a bit so Andy & Lawson sat in and helped during our appointment. It's amazing having medically knowledgable minds to ask questions.

Winston Salem is full of the most kind people, Dan and I are having so much fun. Especially with these nut yarn ball storms. SERIOUS. This is an immediate photo...

Wednesday, May 22, 2013

We Made It!

We are nested safely in Winston Salem. Phew. What a day. All Dan and I can keep thinking and talking about is the devistation from the tornados. We feel really lucky to be alive. I'm so sorry for all my Oklahoman friends from TCU, and all the others whom I don't know, that were effected.

The touching stories of teachers sheltering elementary school students, praying, and trying to save lives. The stories of reunited survivors, and reunited pets, the video and images, jeez. Pretty horrific and shocking stuff.

Again I'm reminded how precious and delicate life is. I have everything to be grateful about.

Always an Adventure

Well, Dan and I flew out this morning for Wake Forrest for my appointment with Dr Glenn Lesser, and my inaugural meeting with Take The Fight.

Unfortunately, Dan and I are sitting on a plane on the tarmac in a city named Rockport, IL (or some name like that). We were in a holding pattern for almost two hours, and now exist among almost 20 other grounded airplanes, refueling, at this airport alone waiting to be allowed to fly into Ohare. Apparently, though not much of a shock, there is a hovering electrical storm (pretty scary storms around the country these days). We have missed our connecting flight, and since all incoming flights were not allowed to land for the past few hours, I can only imagine that when we do get to Chicago the connections are going to be a complete nightmare. 

Well shoot. At least we're near the bathrooms and I'm next to Danny :) The flight does not have a single empty seat, it's a mess in here, but storms don't last forever and eventually we'll make it. And if we have to stay in Chicago, that'll fun too! Nothing like an adventure with the guy I love. Except he's getting really hungry. Of course this is the one flight where I didn't pack snacks. Such a fool!!

Monday, May 20, 2013

BG Therapeutic Range

Hells yesssss!!! I just made it into Seyfried's range for the first time! Niiiice. For a reward, I'm lacing up the sneaks for a long, soothing, celebratory walk. 

Look out ketones, I'm coming after you next. PS a butterfly just buzzed my head tower (I'm on the balcony)...butterflies hate Hermie. Moths too. I can just tell :)

Little RKD Engine

Great news, my blood glucose and ketone levels are almost in the zone! According to Thomas Seyfried's book, my blood glucose needs to be between 55-65 and ketones ideally between 4-6. My blood glucose has been consistently been at 66, 67 and the highest I've been with the ketones has been 2.6, so I'm getting there! It's very exciting!! Living on the restricted ketogenic diet isn't as bad as I thought. I'm 5'7 and currently 135 (I keep losing weight). I eat 1200 calories a day, and 80% of those calories are from fat. You'd think it would be disgusting, but it's actually pretty awesome. I just freshly ground some decaf coffee beans, and created a delicious morning drink with two tablespoons of heavy whipping cream. Yum! Who gets to do something like that? This girl! :) I'm able to eat/drink very rich foods and since the amounts are so restricted, I feel great. I feel satiated. Some days, I do get really hungry, but when that happens I eat a little extra protein or veggies. I want to be successful with this diet, to turn it into a lifestyle, and if I'm miserable it will all fall apart. I stay within the boundaries (80% fat & only 20 grams of carbs) most of the time, but I will not be ridiculous, stressed out, or miserable. That's no kind of life.

It feels wonderful to be succeeding on this restricted ketogenic diet. And, although I don't run any longer, I have thoroughly enjoyed my new hobby of walking. Can walking be a hobby or is it an activity? Well, whatever you call it, I like it. Just yesterday, for the first time, Dan and I walked the Lake Union loop. It was a spectacular day to enjoy the six miles. I kind of tricked poor Danny though, I thought it was only a five mile loop, then as we were parking I googled the map and realized it was actually six miles. I knew that final mile might be too much for him mentally, so I didn't tell him. Then after a while, Dan started to figure it out. He grabbed me, threw me up in the air, then pinned me to his chest and tickled the heck out of me. It made me laugh so hard. I LOVE tricking him because somehow never expects it. He makes me so happy :)

Here's a few cute little geese from the walk. I wanted to try and snuggle them, but they were more interested in eating, and papa goose was eyeballing me with his seriously ominous beak. Goose was not interested in becoming friends.

Friday, May 17, 2013

Happy Birthday Kaal!

Before I forget, JAG, I was laughing out loud about the splattered butterfly on your car and thank you for the amazing DCVax article. So exciting! I've been trying to remember to keep tabs and I'm thrilled that things are moving forward. How hopeful!! This could be HUGE for brain cancer survival.

And on to the news of the day, Happy 35th Birthday to my big brother Kaal! I know people always say that their brother is the best, but if you know Kaal, you know how lucky I am. He is gentle, funny, and patient - smart, kind, and such a cutie. He's awesome, and I love him very, very much!

Thursday, May 16, 2013

Between The Cracks

I don't know why I freak out from time to time. I can be such a moron :) Clearly I have nothing to complain about. I have a life filled with luck (four leaf clovers), beauty (butterflies), and good fortune (heads-up quarter - just found it yesterday). No to mention an amazing husband, and family, with perfect friends, and an insanely patient and understanding support group. 

It's official, my life is definitely a glass half full. No doubt about it. I've got it all! I don't know why negativity enters my mind. When I was younger, my parents would tell me that any activity, any chore, any job, can be as fun as you make it (or something along those lines). In the same regard, I prefer to look at my life and except the hardships, then I want to find a way to make it awesome. 

I think I needed more sleep, a day with Christel, hugs from my parents, and love from the family cat Reece (done, done, done, and done). I don't know why I borrow trouble. Sometimes I think I just start unwinding when I have too much on my plate, so please forgive me if I owe you emails or such, things come all at once and it feels like all the balls are up in the air. I'm going to see how long I can sleep, then try and stay in bed for an hour or two after that. There is rest for the weary, but I may need more than even that :) 

Wednesday, May 15, 2013

Believing The Butterfly

You know what's stupid? Me feeling bad about Hermie. It's just me borrowing trouble which is a completely waste of energy. It's frustrating that I can't seem to just ignore this prognosis and enjoy my life. I hate that. I had a hard day yesterday, full of fear about death, brain tumors, radiation, supplements, diet, prescription drugs, and things in my environment. I'm worried that I'm overlooking things. I'm only doing some supplements, metformin and low dose naltrexone along with the restricted ketogenic diet and the newcastle disease virus shots. I keep researching things to see if I should add stuff and time after time I keep falling into brain tumor websites where people talk about their experiences with specific drugs and treatments. The postings live on in the interwebs even though so many have since died. It's terrifying. I watch and read in horror as so many who fight valiantly, lose their battle, as almost all do when up against brain cancer. In sifting through the helpful information, I also learn of what the end looks like. Loss of bodily functions (urine, feces & vomiting), increased seizures, lack of cognizance, lack of control of the body - arms, neck, everything. I could go on, but I know you get the idea. Each life is different, each body has a different breaking point. You never know which lovely symptoms will be yours. I've had my share of having my mother or Danny have to wipe me and I'm telling you it is the most humbling, embarrassing, heartbreaking vulnerability that I have endured.

I'm sad that my future scares me. I'm sad that I'm not strong enough to just breathe and enjoy this moment. I'm sad that I'm not convinced that I can beat this. I'm sad that I believe Hermie will kill me. I'm sad because I believe this could be the best I might have that it will inevitably go down hill. It's just basic statistics and so far, the statistics have been accurate for me. A recurrence one year after the first brain surgery has a bad prognosis. I tried to fight it with diet and supplements, but it didn't work. Now, with two brain surgeries under my belt in only 2.5 years, and a possible progression of disease within only 6 months after surgery, things aren't looking great. I feel defeated, and nauseous, disheartened.

I can't take every drug, every supplement, every treatment, in fact some drugs can actually cause accelerated growth - but you don't know which camp you're in until you are desperate enough to try anything. Then the drug can extend your life a bit, or it can kill you faster. And the western doctors almost always want you to just go for it because they don't think you're going to live long regardless.

Just as I did yesterday, I'm going to grab Emma and go for a walk. I'm trying to walk everyday, it makes me feel connected with life. I watch the squirrels, the birds, the baby ducks, the fish jump, and the turtles sunbathe, even an old crotchety raccoon walk down the street. Yesterday as I walked the lake, a butterfly swirled around my head, then flew across my path and headed over the water. I don't know what possessed me, but I pulled out my phone and Googled, "What does a butterfly crossing your path mean?" And this is what the first website that came up said...

Animal Spirit Guides : The Butterfly

To our past ancestors, the animal held great spiritual power and symbolic meaning. In Native American culture, mythology and ancient civilizations, each animal is embodied with its own symbolic meaning and held its own unique spiritual power.

A particular animal crossing your path had deep significance to your life and indeed a strong message to impart. The presence of animal wisdom may appear to you in a dream, on the physical plane or intuitively.

The Butterfly

The butterfly is the symbol of metamorphosis and transformation.
The symbol of new life, letting go of old cycles and finding your true inner expression.

The butterfly calls you to expand your awareness, spread your wings and call forth your inner joy.

Let go of limitations, and free yourself to express your own beauty within.

It is the time of spiritual transitions. Symbolic of moving from one phase of life to the next reaching higher, reaching outward, leaving the safety of the cocoon and finding your own place among the flowers of life.

Allowing the wind to carry you forward to your goals and dreams. A time of self-discovery rebirth. The butterfly shows you the beauty within.

Go forth with joy.


I recognize my true beauty within,
I value and cherish all that I am.
I have the power to transform my life.
To experience true joy.

I wish I could absorb the goodness of those words, but so far it hasn't soaked in.

Monday, May 13, 2013


This weekend was one of those weekends that will forever remain imprinted in my mind. It was filled with laughter, and sunshine, and adventures, which recharged me in a way I didn't realize I needed.

It all started with this......a four leaf clover!

On Saturday, Jules, Dan and I spent the day in the sun solving the problems of the world. Aaah to be a fly on the wall for THOSE ridiculously awesome conversations :) I would have recorded, but I didn't want to incriminate myself.

On Sunday Dan and I were lucky to be gifted tickets to the M's game (couldn't trick him into getting a photo of him or both of us so he took this one). It was amazing, the weather was perfect and the game was all about mothers which made me really happy. What a fun holiday! Mother's and Father's Days are both such great days. I love watching people with their kids, I love seeing families come together in whatever way they tend to come together. I love thinking of my girlfriends - and my guy friends - and their little kids. It makes me smile, and feel happy. There was a time when I used to be jealous, but that was short lived.

Feeling revived, and full of energy, this morning I began tackling household chores which always make me feel accomplished. Then, hunger got the best of me and since Dan had taken me shopping for all of the ingredients, I tried a new recipe for the restricted ketogenic diet. It was interesting, the recipe, the process, and the result. I am a big fan of baking and although it is nothing like a real muffin, it is a muffin while eaten in the appropriate diet, it is wonderful and will not feed my tumor. I'm excited about this whole ketogenic diet (emphasis on restricted). This diet is not like a typical ketogenic diet, these recipes are a specific ratio. Each recipe is 4:1:1 - that is 4 fat: 1 carb: 1 protein. The diet is incredibly strict which requires the weighing of all ingredients, but I'm okay with that. It's not as bad as it sounds. I prefer to look at it like I'm allergic to sugar and carbs and if I ingest too much of either it will be very bad. The cool thing is that there are snacks - homemade baked goods - that travel well and have the exact calorie amounts (we already know the ratio). If I freeze items this is going to be easier than I imagined; I just need to get to baking and freezing. Assembly line anyone???

The recipes are complicated though.

And delicate because they are so often using whipped egg whites.

As for the delicate recipe, and the delicate muffins, this not so delicate woman ate two delicious muffins. The first one I thought was good, but I wasn't sure....the second one...oh yesss, that one made me a believer! I thought to myself, I can do this.

Saturday, May 11, 2013

Ignorance Did Not Cause Bliss

Good Morning! A couple of things I've been meaning to mention...

1. I will not be attending the San Juan Half Marathon. It has been recommended that I abstain by my doctor, due to the stress on my body that I'm already enduring from the shots. The research also supports me hanging on the sidelines, strenuous exercise causes spikes in blood glucose which feeds tumors. Instead, I've been walking 4-5 days a week, five miles each time. I grab Emma and check out various streets in my neighborhood, circle the lake, pick up groceries and such. I thought I would really miss running, and at first I very much did, however, I've gotten over it. Instead of yearning to run, I think about all of the stories my mother has told me about her walking as a young girl. The main similarity between walking and running, for me, is that with both exercises I'm able to clear my mind, analyze life, enjoy fresh air, look at the plants, the birds, the squirrels, and I become re-grounded (if that's a word?!). I watch people walk, run, drive, speed by on bikes. I feel alive. Since I don't drive, if I don't get out for a walk, I will just be at home. I'll live hidden. I don't go to work, in fact, I don't do much. So, I force myself out on walks. And each time that I do, I feel much, much better.

2. About that cell phone article. I'm not trying to scare anyone, and I'm not trying to convince you. I don't think that you're going to get a brain tumor if you use your cell phone. Just as some people can smoke their whole lives and never get lung cancer or emphysema, others will not die from their cell phones. However, for other people, cigarettes will kill them. And, for others, cell phones might be their demise. Every person's body is different, and I don't think that cancer works in a way that is singular. I believe that cancer is a perfect storm, a combination of environmental factors (excessiveness of cell phone use, cigarettes, pesticides, sun, food additives, alcohol, medications, prescription meds - just think about the warnings on the commercials, and many other harmful things), maybe some genetics, and perhaps a bit of bad luck. That list just mentioned, is not my personal list, but examples. I'm not trying to freak anyone out, just speaking my opinion. You don't have to agree with me, and maybe I'm wrong. Maybe my tumor is genetic, that there's nothing I did wrong, and because each brain tumor is unique I don't think that all brain tumors are caused by radiation/cell phones. I speak about my fears of cell phone radiation because I don't want anyone else to go through what I'm going through. I wouldn't wish this life on a serial killer. Maybe that sounds drastic, but I wouldn't. Even the most evil people in the world don't deserve cancer. I guess, no one does. I just feel like I was foolish, ignoring warnings about cell phones. I'm telling you I was on my cell phone for 5+ hours most nights for years. I wish I wouldn't have poo-pooed my inner voice. She told me my head was hot, and sweating from my cell use. She told me that it couldn't be good for me. I ignored her. I'm sure moderate use of cell phones isn't a big deal, but I was not moderate. I blame myself for what has happened to my body. I can't change what has happened, and I'm working on forgiving myself, but it's a work in progress. My ignorance has massively altered my future, my entire life.

Anyway, enough about that. Below is a picture that Danny took while we were kayaking on Lake Union yesterday. Seattle has been sunny and hot for over a week - heaven!

Wednesday, May 8, 2013

Children and Cell Phones

This is an article for everyone, but specifically those with children. Please take special note to the images of how radiation permeates the brain while on a cell phone. Fascinating and terrifying at the same time. I still believe that my excessive, obnoxious cell phone use contributed - perhaps caused - my brain tumor.

Inflated American

I have been tracking my blood glucose levels just as professor Seyfried recommends, and the more I track, the less I want to eat carbs or sugars - even complex carbs or apples (my favorite food of all time).

I'm also still tracking all of my foods, even weighing them. I don't like guesswork. I've learned what an ounce looks like of meat, cheese, most veggies and such and I'm telling you - it's a lot less than you think!

Staying under 1200 calories has been a complete piece of cake, no pun intended. Once I get on a roll (jeez - I did it again) it's not bad. I had been eating an apple for breakfast but it tastes too sweet so I'm effectively back on the ketogenic-r diet instead of the standard-r. Both diets will help slow tumor growth - however, ketones fight tumor growth in their own right. So if you can restrict your food, then switch to eating ketogenic style to increase your ketones it's a one two punch.

The thing is, unfortunately, we eat too much and it's doing horrible things to our bodies. Our government standards for calorie intake are inflated - clearly. And most people are eating much more than that. Eating is fun. Moderation sucks. One cookie is good, three more is better - that is what my body tells me as it nervously giggles, 'hee it!' But we know better. We all know sugar is bad. It's obvious that the majority of us are overeating and it's causing diseases, cancer, chronic pain, mood issues, etc. But it's not fun to say no to ourselves. Sometimes I wish food wasn't related to cancer so I could just eat red licorice and jellybeans, then I realize how selfish and stupid and gluttonous that sounds. I have the chance to manage my cancer. I have the opportunity to live longer because of my food/drink choices. What a gift!

I am convinced that if you write down everything that you eat and drink it is impossible to not meet your goal, be it weight loss, lowering BG levels, cutting carbs, etc. It's a lot of work but it leaves no room for denial, for excuses, for failure. When the truth is staring at you in the face you have no choice but accept it.

I hope I'm not sounding preachy. The cool thing about life is that you can completely disagree with my views or think I'm nuts. I'm just like everyone else. I have been known to win eating contests (2 Chipotle burritos...yep you heard right!). I'm an American who loves food, but realizes how horrible our government standards are, that you have to look around and use common sense and make your own decisions on who to trust, who to believe. We all have choices, and one of them, for me, is to believe that the restricted diet isn't that restricted. It's closer to accurate.

Leaving you with a stunning photo from my French friend. This is her view. Stunning!

Monday, May 6, 2013

Progression vs Stable

I received my MRI results last Thursday. It took over an hour at the UW records department to get a copy of my radiology report. I almost threw up with the results. Immediately, I called Dr L's office at UCLA, for a second opinion, knowing that my case had been reviewed the day before at the tumor meeting. I spoke with EY Dr L's research nurse, the woman who presented my case to the board, and she said that the group believes I am "stable". I specifically asked if there was any area of concern (since they had been watching a specific area in January). Emma said all of the specialists, including Dr L who is on the board, believe things are okay and that I should go ahead and schedule my next MRI. I asked if I'm able to push out the MRI to six months (Dr L had originally said six months, but then I had a seizure and ruined everything). Emma said she would talk to Dr L about the possibility, and I just received the verdict this morning, my next MRI should be in July - three months. Bummer. I was really hoping to push that back. It's probably best so that we can monitor the shots and such, but MRIs are so stressful, and a completely ridiculously inexact science. Sometimes they are actually useless.

Here are some quotes from the Findings section of the UW reading that sent me in a slight tailspin...

"Compared to the January 26, 2013 exam, the extent of FLAIR signal abnormality appears increased on the anterior margin (image 702/37) and possibly postersuperior margin (image 702/37)."

"There is mild linear dural enhancement overlaying the upper section cavity"

The nail in the coffin came with this quote from the Impression...

"Findings could represent progression of disease"

Now, UW does not know that I'm doing the newcastle virus disease shots, in fact, I don't even meet with any doctor at UW any longer. I got sick of them pushing radiation on me, bullying me. They didn't even inform me of Dr Liau's clinical trial, I had to find that out on my own, through research and friends. They even discouraged me from doing the Ketogenic Diet. They said if I didn't do it perfectly there was no point. That's just asinine. Any time you keep your blood glucose low it's better than having it high, any time you have a day or a meal that is low carb, it will make you live longer (when dealing with a brain tumor). Yes, a restricted KD is best, but if you can't be that crazy disciplined, it doesn't mean you should grab an extra large movie popcorn and 84 ounce coke. Life is a sliding scale, and so is your blood glucose level.

So, I'm trying not to freak about the less than amazing MRI. Dr N had already warned me that the first couple of MRIs could look worse then get better; that it could appear the tumor is growing. What a horrible notion though, to trust someone (even when they're a world renowned doctor) with your life. Then, watch with your own eyes as something may appear to be getting worse but trusting that it will get better. I have yet to ever see my tumor get better once it has grown. I'm hopeful, and nervous, and excited at the concept of seeing my brain get cleaner, healthier, more beautiful. I need to trust, and believe, and relax. :) I'm glad I have the appointment with Dr Lesser in NC on the 23rd of the month. I deeply hope he agrees with the UCLA tumor board, and not UW.

The stress of the MRI (among other things - life has been NUTS), sent me off my RKD. I've been tracking my BG levels and my fasting level in the mornings has been 67, 64, 71, 63 - then this morning after having desert last night it was 84. Oops :) It was nice having several days of fun, though. Of eating grapes, apples, ice cream, a cookie, wine, sandwiches, humus, etc. With all of that I only went above 100 twice. After desert last night it was 117. On Saturday my fasting rate was 64 then Dan and I went to the gym and after working out it was 107. A 43 point jump. Holy crap! That's why Dr Seyfried doesn't want you to work out. He says you can do relaxing walks, but no real exercise because it raises BG levels too much. I trusted him, but also wanted to see for myself. Even though I had read the research it was eye opening.

This BG monitor is so much fun. It hurts to prick yourself, but the information is fascinating. This week instead of doing the RKD diet, I'm trying a RSD. RSD = restricted standard diet. I won't be eating the typical standard diet, however, because I will eliminate all simple sugars and carbs. The restricted part, for me is 1200 calories/day. I want to see how a healthy whole foods diet will effect my BG levels. In order for me to jump on any band wagon - even if it's backed by science like the RKD - I want to have all the information possible before I ultimately commit. I know I have been so excited about the RKD, and I truly hope you don't just take my word for it but read the amazing research for yourself, however, I always want to be completely sure about my choices.

The tricky part with the RKD is that Dr Seyfried wants you to keep your BG levels between 55-65 which is considered hypoglycemic. In the past when I have extremely low BG levels it has triggered dizziness, nausea, auras, even seizures. I'm not sure if it is healthy for me to be that extreme. The only way to find out, though, is if I test myself and really monitor my body. If I'm unable to remain in Seyfried's range but must instead live in the 65-75 BG range I can only imagine that it would be better than me just saying eff it and eating muffins at whim. Sometimes it's too hard to be that crazily restricted. All of the research is inspiring with the results they get, but putting it into practice on humans is shockingly drastic. Anyone who has to monitor BG will truly understand the challenge of diet and exercise and BG levels. The whole thing really makes me wonder about what Dr Seyfried eats :)

Also, sorry about my lack of response with emails and voicemail. I am trying to rest up and get caught up but it's a slow process.

Wednesday, May 1, 2013

Take The Fight

Good Morning! It's sunny and gorgeous outside, I may just grab Emma for a walk in a little bit. I have all kinds of things to take care of, though, so I'm a bit stressed. I saw a comment this morning about contacting me privately, I'm sorry for the confusion - it's definitely not easy to see my email address. If you scroll down and look at the left side of the blog, and click on the photo of Danny and I, it will send you to my little bio. On the left side of that page it says, Contact Me and if you click on Email it will direct you. But, in the interest of ease, here it is :)

Part of my stress is organizing for a very exciting trip. I have been invited to join the non-profit group TakeTheFight. I'm so excited! I'll be the first remote patient! So here's the deal, this program pairs incredibly gifted, driven students with cancer patients. My strategist is Lindsey, and I'm flying to meet her, the rest of the group and meet with Dr Glenn Lesser a neuro-oncologist at the end of the North Carolina! Fun! Are you confused? I'm not explaining this very well...

I'm gathering all of my medical records from UCLA and UW and getting all of them over to NC so that they can make copies and compile everything in a coherent manner. Lindsey will review all of my pathology and review my case. She will help me make sense of what I'm going through, of what to do next, to understand what the doctors are recommending, and hopefully will help me understand my unique tumor morphology so that I pick the most effective treatments. Each brain tumor has its' own genetics and what works for one tumor - even within the same type - may not work for another. You really need to personally target your tumor, and approach it with a specific arsenal of treatments based on your unique pathology. That reminds me, I started my metformin today. I need to email Dr Seyfried with a question though, in his textbook he recommends against metformin, instead opting for a drug that is not released to the public, and another drug that costs $7000/month. I need some clarification. Dr C says I can do all at once (except for the one that I can't get access to). I want to know why Dr Seyfried isn't keen on the metformin with the RKD (restricted ketogenic diet). And I need to call my insurance to see if I can get the oober expensive phenylbutyrate (sp?) covered - not holding my breath. Phenylbutyrate fights gliomas on their own - can completely kill them! But the drug was created for a genetic defect. The price is exorbitant because those who are born with the defect are covered by the government for the rest of their lives. So, the pharmaceutical company can put whatever price tag they want on it and the US government has to pay it. How effing sick is that!?! It's not as expensive in Germany, according to Dr N but I can't get it there. Ok. I'm clearly off on a tangent and need to keep taking care of things or my brain will explode. If I didn't explain TakeTheFight very well, please check out their website! Oh shoot - just check it out anyway, the program is GENIUS. It's the future of cancer care. To have your own advocate? Heck yes! And what's better than a student? Nothing. Young brilliant minds. Problem solvers.

Here's Lindsey, my new partner in crime...fighting :)

I've attached an interesting interview with Dr Thomas Seyfried, the King of Keto (I just made up that nickname). Hope you enjoy it as much as I did.

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