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.

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 :) jessoldwyn@hotmail.com

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 month...in 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.

Metabolic Control Analysis