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.

Invisibly Expensive

I'm feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It's palpable. It feels good!

I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20's I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul's mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then run. That I have survived a second brain tumor, and now I'm fortunate enough to travel for medical care. That I am here, that I'm able to fight for my health. That I currently am without a tumor mass in my brain. It's amazing!  

Last night my buddy Jess and I were laughing about my body. We laughed because Dan and I may not have fancy things, or expensive cars. We don't own a house, or have any assets. Instead, last year alone, we had just shy of $90,000 of medical deductions for our taxes. And that's only the amount that the government recognizes as tax deductable, we had more that we could not write-off. Essentially, in one year, my body cost us over $100,000. It's weird, I'm not draped in name brands, or fancy jewelry, but I probably cost more than 90% of the outfits walking around even the most expensive stores. I am invisibly expensive. Like a diamond in the rough. 

It's humorous, the expense of my body, but at the same time it's kind of sad. I wish Dan didn't have to spend every extra dollar on my health. I wish he could fix up his car, or have a vacation that wasn't centered around a medical shot, or Dopa PET scan. I wish I could give him the wedding he deserves, or shoot, just provide the honeymoon (hubba, hubba). But we will never spend the money. We can't. 

I am deeply happy to be alive, to be able to walk outside and brush my fingertips across our beautiful blue hydreangeas, or kneel down to trace the back of my had across our soft lambs ears (yes, yes I know, technically they're weeds, but the bees and butterflies love them so much). I'm am immensely grateful to be alive, and when I feel disappointed by the inevitable burden that is placed on Danny and my parents (who provide the venom and help with the cherry sales and many things during surgery times and so much of my emotional support), I try to remind myself that we can always get 'things' later. That life won't wait. That my medical care isn't an option. We work so hard to get to the place that most people take for granted. It's not their fault, it's human nature. Young people aren't supposed to get sick. We're supposed to hearty, and healthy and invincible.  

When I feel sad about the things that Dan doesn't get to do, or how his life is changed by my health, I try and picture myself on the west side of the island being whipped by the salty air, or I anticipate the sweet scent of native blackberries that will permeate the air very soon. I just change the subject, and hope that my health will continue so that burden of me, and my care, will lessen. That someday we will be more normal. To not have such financial demands. That I will be able to someday fulfill Dan and my dream of owning a home, and for me to bear him children. It's scary to dream, especially in a world like ours that is so fluid, and unstable, but if you aren't dreaming, then you aren't living. And if you aren't living, you're just not dying.

Here's a delicious drink I created yesterday on my quest to survive this Seattle heat spell. My favorite part is the froth on the top, but if you don't like that just give it a quick swirl with a spoon before you poor. This is not a smoothie, it's light, and meant to be poored over ice.

Kale Cooler

1 liter coconut water 

1/2 cucumber (with peel)

5 large kale leaves (stems removed)

1 celery heart & leaves (I eat a lot of celery as snacks so I keep the hearts and leaves for my smoothies.)

1/3-1/4 cup mint (stems removed)

1-2 inches of ginger root (peeled)

Here's the nutritional information for the whole pitcher: 

The total calories for the entire pitcher: 348. You can add extra water to dilute and the concoction will go even further. I like to drink a full, regular glass, then I keep filling the cup with water because it retains some of the green goodness as flavor.

Don't just not die. Do something that makes you feel alive today.