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.

My First Video Blog

At the suggestion of a few friends, I have created my very first video blog! It is ridiculous, but I think I'll get better. This one is just a little introduction...

The Partially Awake Craniotomy

Ok, here it is, the story of my first brain surgery.

On Tuesday, April 27th at 4:30am my family squished together in my dad's truck on our way to UW for my 5:00am appointment for surgery. I sat between my parents, and in the back seat Jessica Abu Dhabi was sandwiched between Kaal and Danny. We knew where we were headed, but we had no idea how intense the journey would be.

Along the drive I joked with my dad that he was torturing with me with his coffee. I had been on the no-liquid or food diet from midnight on due to the surgery restrictions. I LOVE black coffee, thick as mud, just the way my dad makes it, and I was really wishing I could steal his cup. I could see that my mom was nervous, and there was definitely strained humor along the car ride as we tried to joke around. It was almost as if everyone was trying to pretend that we weren't headed to the UW, that maybe we were heading to the airport for a family vacation. I remember thinking that I was caught between two different worlds, excitement for my surgery because I was going to be awake while having doctors work on my exposed brain, and the other world of the unknown.

Once we arrived at the surgery pavilion at the UW, I checked in and we sat for a few moments before I was whisked away to surgery prep. When I changed into the hospital gown, and the assistant shaved the areas of my skull I got even more excited for the next leg of my journey. Next, they placed electrodes (don't know if "electrode" is the proper term, but I'm just going to use it anyway because I think you get my point) around my head and drew circles via marker around each one of them to mark the proper locations for the mapping (thanks for that! It took weeks to remove the permanent marker!). The computer calculates the location of the incision, but the electrodes are placed by hand. Below is a photo of me with the computer electrode thingies all over my head. My pre-op nurse Daisy, was pretty angry at the assistant for doing such a crappy job of shaving my head (you can see in the 2nd photo the shaved hair on my pillow). She basically kicked him out of our room because she knew (I was clueless) that I would have to be in the same gown for a few days and all that hair would itch like crazy. Gotta love nurses, they really take care of you! That's Daisy's hand cleaning me up in the top photo.

After a quick consultation with my anesthesiologist, my family quickly came back in to say goodbye I was headed out the door for surgery.

Once I was wheeled into the operating room, I remember saying hello to my smiling surgeons, and the technicians from my consultation from the previous week, and seeing about a dozen other faces that I didn't recognize, but they were all really kind. I remember feeling completely comfortable, despite the cool temperature. They gave me a run-through of what I should expect and before I knew it my mouth was covered with what looked like an oxygen mask and someone was counting down.

The next thing remember, I was laying on my right side on the operating table as I heard someone calling for me, "Jessica?" The anesthesiologist was right, once I woke up I didn't feel groggy at all. I was completely awake, and ready to go. I had been waiting for this moment, anticipating this portion of the surgery like a test. I was ready to do everything I could to aid the surgeons. To keep the mood light, we had some small talk and joked around a little bit and they told me that they were going to go through a sample of images on the computer screen and I was supposed to name the image (for example if it's an image of an apple, say "apple"), while they stimulated different locations in my brain.

As the image series was conducted, they were probing my gray matter to discriminate between healthy gray matter and tumor matter. Throughout the image series, as I was naming the images, every once in awhile my body would involuntarily jerk. I remember at one point, my torso spasmed, and I said to the surgeons, "Oops, guess I need THAT section!" They laughed, and said something along the lines of, "Don't worry, we'll keep that."

When they were done with my image series I said a variation of, "Thanks guys, that was really fun!" And I went back to sleep with the help of the anesthesiologist. For the remainder of the surgery while I was asleep, the surgeons weeded out the groups of tumor cells as best they could. It's impossible to remove the bad cells. In the size of the tip of a pin is a million cells. As you can imagine, it's impossible to differentiate between every single cell, or even small groupings of cells. Also, there is no visual difference between tumor cells and brain cells only a difference in density so they used an ultrasound machine to discriminate between the unhealthy and healthy sections. As one of the UW neurosurgeons explained to my family and me, the tumor cells in my brain are like a bucket that has had a handful of sand tossed into it. Although most of the sand is concentrated in one location, there's sand all throughout the water.

The next thing I remembered I was awake and a little hazy. I vaguely remember smiling at the surgeons as I was being wheeled out the door and I gave them two thumbs-up signs (which was later confirmed by the Chief Neurosurgeon when he spoke to my family and friends in the waiting room - it's almost too cheesy, right?! A double thumbs-up?? I've never been good at playing it cool. One thumbs-up sign would have sufficed). At that point I remember feeling exhausted, but at peace. Little did I know what was in store for the next 24 hours. I thought I had made it through the hard part, but the really frighting reality was my continued mental deterioration and the emergency surgery the next day. I had no idea it wasn't ALL just fun and games as I had been hoping.