Cherries Are A Superfood!

I'm home, and although I tried getting back to bed this morning (at Dan's request) I can't help it but hit the ground running. My parents will be here in a few hours to spend the night, as they're flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent's house. Because - for the first time - I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we're back on the next ferry off the island so that we can make it home and rest. Isn't it crazy how everything always bottlenecks? NYC, venom, cherries.

Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!

Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.

This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.



Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).

See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!

Off to NYC

I'm headed for my tenth immunotherapy shot right now. I'm a little nervous since I'm barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I've been dizzy, and frustrated. I'm sick of having to deal with seizures.

I feel like a prisoner in my own brain. You'd think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I've been isolated further. Instead of not being able to drive, now I'm trapped not only in my house, but deeper, worse, I'm trapped in my brain. I don't trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels? 

If you've read the blog from the beginning, you'll remember the times I tried anti-seizure meds. I've been on three before. Each time they made me violently depressed, not able to leave the bed. I didn't want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn't even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can't live like this. That's what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn't get seizures. Or at least it was a rarity. Not back before the tumor (that's impossible), but back when we lived at Densmore. We had a specific diet, and a specific lifestyle, that worked. No more crazy tumor diets. Dan and my parents have been adamant about me avoiding anti-seizure meds - they remember the effects. So I agreed once more that we could try diet and lifestyle one final time, but if it doesn't work, I'm trying more meds. No one understands (unless they've dealt with seizures) how isolating, and terrifying, and limiting they are. It's exhausting, not just for my brain or my body, but for my soul.

The meds are still scary, I don't support them fully, but I'm desperate. Just looking back into them is frightening. They can have side effects like infertility, or other issues which you wouldn't anticipate a correlation. More obvious issues include slower thinking time, memory issues, here's one link with information: http://m.neurology.org/content/69/22/E27.full.

For now, I'm back on track focusing mostly on seizures, not necessarily tumor prevention - although often they have similar treatments, two birds one stone. I kinda feel like I'm playing wack-a-mole right now, and all I want is to be able to live, to cook a meal, or go for a run with friends and not worry about being stuck and having a seizure. It's ridiculous, and I hate it. Just when we get great results about the tumor, the seizures flair up. Incredibly lame. 

As we talked, me mostly venting, Dan made 12 guidelines to get us back on track to emulate the Densmore days. Here they are in no particular order...

1. No processed sugar

2. Limited fruits (an apple a day, or berries in a smoothie)

3. No grains/legumes

4. Unlimited vegetables

5. Limited/moderate nuts/seeds

6. Lean meats (but only 10% protein daily)

7.  Regular nights in bed by 9:30 pm

8. 60 minutes of excercise daily (even if it's walking, or floor exercises at home. Doesn't have to be consecutive minutes.)

9. Limited dairy

10. Only decaf coffee, and that should be limited as a special occassion treat.

11 & 12. I can't remember right now.

We'll see how it goes. Essentially, it's just a guideline to live healthy, and happy, and it should get me back on a regular stable blood glucose (low BG is a trigger, which can often come after a spike), have more regular energy (excercise as a priority), and better rest (regular sleep schedule). You'd think I could just do this whole thing already, that if I just lived moderately, that it would all be fine. But I have some triggers that I need to isolate. I have to pinpoint the problems so that I can avoid the issues. Please wish me luck. I'm so tired of fighting, fighting the tumor and the seizures, but it's what I have to do. I won't give up. There has to be a way to succeed.

UCLA Results

I finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally. 

Flowers from Danny after the good news...

My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient.

For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I'd be happy to. Compared to the tumor, they're just like gnats. Annoying, but I can live with them.