Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

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.

Angels Everywhere

A guardian angel left a rainbow trail today in the middle of the afternoon. Don't see that very often. My photo doesn't even begin to do the colors justice. There was no rain, no precipitation whatsoever. I have no idea how it occurred, but it was magnificent. I've never seen anything like it. It felt alive, as it waved, and inched across the sky. A happy sailor.

According to the MRI tech this morning, we should have the radiology report on Monday afternoon. I have to head down to the medical records department at UW, and check it out, then fax it over to UCLA. I'll let you guys know how it goes. I have no inkling, no premonition, no intuition one way or another. All I do know is that it's a beautiful day, here in Seattle, and I am worn, exhausted. I am sitting, wrapped in a blanket, my feet wiggling as the sun licks my toes. It makes me deeply happy, can't help but laugh at the simpleness in this moment. 

Appointment With Dr Liau

The appointment with Dr Liau was AWESOME. She had reviewed all of my scans, and wasn't sure if I even had any tumor tissue. She said that before she would cut me open, she would need for me to have a Dopa PET scan. It's the scan that we've been wanting, but my doctors at UW would not authorize. It's a special scan that's used for low grade tumors. The scan would differentiate between tumor cells and scar tissue.

If the results from the scan show that the tissue in question IS tumor, she is very confident that she can remove it. She would have me do a functional MRI to verify the location of the tumor against healthy tissue. A fMRI is a typical MRI except for the fact that they ask you a bunch of questions, watching the areas that light up. Then they will stick little needles in different muscle groups and watch again for the different areas of the brain that light up. My tumor is in my language and sensory location. All in all she seemed very happy with my current situation, that I seem perfectly healthy, and the area in question seems to mostly be growing out in the tumor cavity which is great! It's better if it grows into the void as apposed to into healthy tissue.

Dr Liau thinks she could remove all the tumor (if that's what it is). I would not need to do another awake surgery, unless something comes up on the fMRI (if my speech or movement areas aren't where other peoples are). I would not need to shave my whole head, she would just shave along the original incision on either side. Sounds do-able!

The meeting happened so fast, it seemed, although she answered every single question. I'm so excited, and I literally adore Dr Liau. I can't go back to UW. I'm a convert. It's going to be tricky to visit Liau for all of our MRIs and appointments, but heck, she is LEGIT. She was on board that I should not do radiation (at this point). She scheduled the proper test, Dopa PET. She is kind, and exceedingly intelligent. She's the best oncologist I've ever met.

Now I need to go, I have an appointment with an acupuncturist. I'm very excited!!

I can't believe how different Dr Liau is compared with my other oncologists at UW. My oncologists at the UW have been pressuring me for radiation since October, and they keep telling me how much the tumor has been growing, constantly freaking me out. Dr Liau was quite the opposite. And, if it does turn out to be tumor, after reviewing the Dopa PET, Dr Liau was very confident that we could remove that tissue, and use it for the personalized vaccine.

This just reiterates to me the necessity of choosing the right doctor. Thank you for all of the support along the way, this journey just keeps getting better and better!

Synergising Treatments

How awesome is my friend Sara? She's THAT awesome! Remember my self promoting t-shirt from my very first race? How embarrassing. You guys are so nice to put up with me! Thank you for cheering me back to normal; for sending me ass-kicking energy. Thank you!! I have such a killer team...no pun intended. I can not wait for the big wake for Hermie, a massive party when we can dance and get goofy. There WILL be a day when the cancer is gone. He just doesn't know who he is messing with, not just me, but my rallying troops. We are a force!

In a few minutes I'm headed for my 1.5 mile run to the bus stop, then a 40 minute bus ride to get my high dose vitamin C IV. I have a new system, it's important to hone my schedule of pills, making each dose work with the other supplements or IVs so that they're working synergistically, multiplying the effectiveness. On IV days, I take 10 bioavailable curcumin & 6 piperine, then thirty minutes later, I take 18 homemade sulforaphane pills. One hour after that I am hooked up to my IV. I'm out of my high dose sprout smoothie (gotta wait until my parents grow some more), but when I have more of that, I'll add that in to the mix. The isothiocyanates work with the IV's, especially the curcumin and resveratrol. This whole protocol is intricate and takes serious scheduling - but it's incredibly exciting! 

I have to focus on increasing the efficacy of the IVs, that's why I'm working my supplements around the IV days. At this point, the IVs are $735 per week, and the chemo drink - which we're rolling into pills - cost $40 per drink. So, just with these two treatments, we're pushing $1015 per week. Fighting cancer the natural way is incredibly expensive, but it's effective. Every treatment that we're exhausting has been proven through scientific experiments. They all fight brain cancer or I wouldn't be doing it. The creme de la creme, though, in alternative treatments for brain cancer is dendritic cell therapy which costs, when completed (all three rounds), around $45,000 and lasts for about 14 months. We're meeting with my doctor on Wednesday after my last IV for the day, to get more information. They take some tissue from my tumor specimen (I called around to various departments at the UW last week and found my tumor,  a complete miracle since my surgery was over two years ago), and they create a personal vaccine. Pretty impressive stuff which has about a 50% success rate, and can be combined with all of my current treatments and supplements. 

The expense of all these supplements, IVs, and treatments are obviously mind-boggling, but if we're smart, we will only include the most effective choices and they should work together to get me healthy. I keep hearing from friends, and family, that money should not be a reason to avoid a treatment. Get the treatment and then money will come later. Danny and I figure that we will be paying off my medical bills, happily, well into our golden years. The expense of treatments used to completely freak me out, but lately I don't care as much. I need to get healthy, and once Hermie has left the building, I will write my monthly checks for payment with a big glossy smile. The money thing IS scary, let's face it. Money is important in order to afford life's necessities, and then above that, it's important in order to have luxuries like children. But, Danny and I realize that as long as we're healthy and alive, we will be happy under any circumstance, as long as we're together. 

Eating Away at My Core

My adorable little nephew

Well, I tried the higher doses of artemisinin, and it appears as if my body didn't prefer it. According to research, there's quite an individual variability of effectiveness. So, last night I started back on the low doses of Artemix. I'm back to doing the same protocol from Oct - Jan. I'm back in contact with the lead researcher at the UW who knows all there is to know about the artemisinin derivatives. He's originally from India where he was a medical doctor, but he moved to the states and earned a PhD, and he now researches artemisinin. He is the most kind doctor and researcher, possibly in the world. I emailed him and discussed what happened with this latest protocol and he expanded on the reasons why the low doses work so well. There's a 24 hour cycle where you eat antioxidants in the morning and at lunch, then refrain and stop eating in the early evening. You then take the artemisinin four hours after dinner with a cup of whole milk. Then you start back over in the morning with antioxidants. By utilizing the 24 hour cycle, you keep your body healthy and it cleans up any residual damaged cells, then when you take artemisinin on an empty stomach, the body creates more free radicals which allow the artemisinin to attack the cancer cells. The artemisinin works its' magic while you sleep and when you wake up, it's time to clean up all of the mess. I'm excited to be back on the low doses, it's so much easier.

It's crazy, but I never liked the high doses. It made my innards hurt. I'm disappointed that Herman grew, but I'm not surprised. I had been noticing some mental deficits, nothing too serious, but things were different up there. I didn't want to jump to conclusions because there's just no point in freaking out, but when I saw the further infiltration of Herm on the MRI, it all made sense. The growth is in my speech and language area, and although I feel like I'm progressively better at expressing myself with the written word, the deficits are when I'm speaking aloud, or processing speech. Tricky stuff. I still don't think anyone else would notice, but I notice and that's creepy enough.

The past twenty-four hours have been pretty tough. My family all returned to Friday Harbor and Wenatchee, and that's when the whole thing hit home. Here we go again, another three months of trying to stop the growth of Herman and hopefully, someday, actually see him shrink. Yesterday, as I was laying in bed trying to nap, I wondered if I was going to be able to keep up the fight. This is exhausting. Sometimes I feel like giving up. I know that I won't, but it's so tough. Luckily, my friends Meghan and Nicole invited me to run the lake. If not for that, I probably would have just laid in bed. I just need to keep one foot in front of the other, and do what I can. At least today I get to visit my friends at the retirement home, they always make me feel better and it's a great excuse to get up and out of the house.

It's so foreign to have a blob growing in my brain. And to feel it, recognizing that it's there and it's eating into who I am, deep in my core, my thoughts and processing, it's absolutely fascinating, and horrible, and terrifying.

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.