Early Call

With a 1:30 am wake up call, I'm in bed and it's just past seven. It was easy to head to bed since I can't eat much anyway because of scan restrictions. No dairy, legumes, animal proteins, nuts, seeds, soy products - I can't even remember all the restrictions so I focused on what I could eat, which is fruit and veg. I'm not hungry though, just physically exhausted. I can barely keep my eyes open because last night's sleep was terrible - wide awake until 3:00 am.

I had been fine for the last few weeks, my mental state has been a solid 8-10, but last night it hit me. It was inescapable. We have a scan in the morning that will show, with more than a 80% accuracy between necrosis, and recurrence or scar tissue. It's a brilliant tool to have, but one that leaves little doubt, and really no denial either. At first, I thought this could go two ways. Tumor or no tumor. Then I started reminding myself that I won't die of this tumor tomorrow, or next week, or even, heaven forbid this year. We're playing the long game. It's exhausting, but as you get to know the strategies, and learn from others, there are hundreds of thousands, maybe millions of different combinations of treatments. I'm certainly not at the end of my rope, even though, sometimes it feels that way. 

I don't really want to do the scan because I don't want to have brain cancer, but since I do, I might as well get some answers. I have no expectations; I have no premonitions. I have hopes that this blob has a maxSUV of under 3.0 (which to my understanding will not be considered recurrence), but there are factors out of our control, variables that I can't even pinpoint. 

So here I lay in bed, hoping for a quiet power. I hope for strength to get me through the days ahead. I will allow myself to laugh and have fun, even though on the inside I might feel like crying. If needed, I will permit myself that indulgence too. I hope for my friends that they are safe, and in this exact moment, are smiling. 

Results will be Monday, I will try to post them as soon as I am able. Thank you for the continued love, it's much appreciated, but above that it's needed too. Sometimes I can literally feel the hum of people's energy, and who knows maybe I'm just crazy, but I think it's real. 

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):

• You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
• You want a neurosurgeon that performs 300+ brain tumor resections a year.
• You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
• Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
• After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
• What is a fMRI? Click for information.
• If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

Sabotage

It's ironic that I pride myself on encouraging others to take care of themselves, and yet here I am a hypocrite avoiding my own life saving tricks. Sometimes I shoot myself in the foot. As I said in an earlier post, I took this week off of the high doses of artemether because I wasn't feeling very well. I wanted to give my liver a break. I had every intention of taking my high dose sulforaphane drink yesterday (the natural chemo), but as the day wore on, I kept avoiding it, deciding that I would take it just before bedtime and try to sleep off the nausea. Of course, just as it always happens, when I procrastinate, I end up falling through. And as the evening disappeared, my stomach increasingly clinched, fearful of the nausea and ill effects. In my infinite wisdom, I poured myself a glass of wine (yah, genius, because THAT'S good for my liver). Then another. Foolish girl. It was pure sabotage.

So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I'm drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass?

Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby's diarrhea - the kind of baby that's eating whole foods (mothers know what I'm talking about). Megs thinks it smells like burnt hair. Either way, it's horrible. I find myself about to barf, even though I haven't even drank any yet. UGH. I'm so frustrated.

As you can see, I'm not being as rigid with my diet these days. I'm acting as a guinea pig, waiting to see if this MRI will show a regression of the tumor even on a more Western style diet. I just don't have the strength or will to eat as good as I did last time. I'm scared that I'm feeding Hermie, but at the same time, I can't seem to stop myself and be a good girl.

I eat well most of the time, but I know from experience that eating well most of the time is not enough. Hermie grew a bunch from July of 2011 to October 2011. It was shocking - that's when they initially asked me to start doing radiation. Sometimes, because I feel so well, and I look healthy, I forget how serious this cancer is. If I would have accepted the standard care of radiation, I would still be dealing with necrosis. My healthy brain cells would still be dying - it takes around 6 months for the death of cells to taper off. I would be bald. I would be trying to recover from frying my brain. I look healthy because I have opted out of Western medicine's procedure. I have to try and remind myself that my cancer is very serious. It's easy to forget sometimes. I want to pretend that I'm normal, that Dan and I can laugh and talk about having children someday. Sometimes I don't want to deal with reality. It seems like this is one of those times. I need to get back up on my feet and back with the program. I'm hurting myself, and those around me whom I love. This sucks.

Roasted Portabella Mushroom, Red Quinoa & Upland Cress Salad

Upland Cress Salad

1 bushel flat leaf parsley (chopped fine)

1 English cucumber (chopped)

1 red bell pepper (chopped fine)

1 bushel upland cress (chopped)

3 green onions (chopped fine)

1 large lemon (juiced)

cracked pepper to taste

I need to be eating a bushel of upland cress every day (when I'm not on the artemether). At least a bushel. And the thing is, I know it. I know what I need to do. Why am I sabotaging myself with wine and other things? I'm embarrassed and disappointed in myself. 

These guys are fishing at Green Lake almost every single day. Aren't they cute?
They remind me of my brother. He'd be fishing every single day if his wife would let him :)