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.


  1. Hang in there, Jess. I have been checking every day to see about your results. Hoping and praying right alongside of you. Medicine is not an exact science, so it makes it hard being a patient at times, as I well know also. But sounds like you are doing well and have a great plan. I finally got back to my yoga class today after several months off from moving. I feel so much better and need to keep at it. It is gentle, stretching, and relaxing. I feel much more relaxed, positive, and healthy! Hopefully it doesn't raise my blood glucose levels! :) I've had a harder time on my diet lately. Don't know why I keep craving things. Keep up the hard work. One day at a day. Your friend, Jessica

  2. Your doing an amazing job. Have to say loved seeing the word stable :) Truly do belive everthing your doing is working. You got this! HUGS! Mel

  3. If you track your BG long enough you will become a human BG meter. You will feel when it is low, and know when it is probably higher. Different stressors and foods will give you different results, so you will learn to listen to that internal meter to stay in your range as much as possible, but not beat yourself up when you are higher than you want. It's kind of fun to track, in a gross everyone out kind of way, huh? You are doing awesome Jess, keep it up! Xoxoxo rainy

  4. Hang in there Jess!!
    Pete and Erin

  5. I know how you feel with the MRIs... after each of David's MRIs, I scrutinize every word. It can be very stressful, but stay positive! I am super impressed by your dedication to the diet. I started to read up on it-- and it is tough. I wish I could get David onboard with it! Thanks again for the Dr. Chang contact info.


  6. Love knowing that you are not only helping yourself but so many others along the way! Keep up the good work Jess, we all love you!


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