Monday, September 24, 2012

Criminal Charges

Well, today is off to a great start! After playing tag with the Seattle assistant district attorney, she let me know that the city is in fact going to press charges in my attack case!! Apparently, the city receives over 200 new cases a week, and they were very clear from the start that there is no guarantee that charges would be pressed. This case has bounced around a bit, within the system, and I've had to give my statement several times. Each time it was hard, sad, and stirred quite a bit of emotions.

When I heard the news this morning, I thought I would be relieved, happy even, but instead I'm sad. The man who attacked me is married with four children. The oldest is 10 and the youngest is a set of infant twins. I did not intend to hurt his family, but in order to keep others safe I felt compelled to help the city press criminal charges. I know that this man has sexually accosted two other women, and he has become more and more aggressive. To attack a woman in her own home, working as her maintenance man, is incredibly brazen. This man should not be working in people's homes.

Anyway, I'm off to catch the bus for another counseling session. Alison is going to be THRILLED by this morning's news!!

Also, I included three photos from Saturday night. Throughout the night I was reminded of how wonderful our friends are. I am so glad that our buddy Eric got his job at the Blume Company, where he met Meghan who is married to Sean, who he then introduced to Dan, then Dan included me, and now Meghan and Sean have introduced us to all of THEIR friends, and Dan and I now have a huge network of fabulous buddies. There is no limit to the kindness of those around us, we are completely surrounded by love and support. And I know it's not just Seattle, it's Friday Harbor, Wenatchee, Poland, Sweden, and so many other places. Thank you! I am always grateful for all of the hugs and support. Especially with this upcoming clinical trail. I've been battling panic attacks, that's why I hadn't been posting lately. But, that's for another post, I've got to get running for the 358 or I'll be late!

Saturday, September 22, 2012

What's Bright & Has Dots All Over...

This is my second year donating a piece of art for my friend Meghan's philanthropy's art auction. The photo below is just a portion of the 30 inch x 30 inch canvas, which took over 60+ hours to create. I hope that it raises gobs of money for their fundraiser!!! I'm off to shower, and then off to the auction!!! Hope everyone has a wonderful evening!


"Humans, like this piece, are full of color. They are constantly changing, shifting, growing, reaching. Even at our darkest points, we're never far from connection, laughter, euphoria. Each person, each color, is stunning alone, but when they come together, when WE come together, each unique shade, hue, and tint become more vivid. We are all more beautiful, more alive, as a part of our community, our human family."

Wednesday, September 19, 2012

New Supplement Recommendations

Sorry it has taken me so long to give the update on the supplements that Dr Chang recommended. I'm going to break them down below:

Lactoferrin (250mg 2xd) - Immune booster (read more here)
EGCG (250mg 2xd) - Amazing antioxidant (read more here)
Cloud Mushroom Extract (1500 mg 2xd) - Immune booster/cancer suppressor (read more here)
Thymus (4 sprays 2xd) - Immune booster (read more here)

Banerji Protocol 
Calc Phos 9X (3 pills dissolved under tongue @ 10:00am, 4:00pm & 10:00pm) - (read more here)
Ruta 6C (3 pills dissolved under tongue @ 7:00am, 1:00pm & 7:00pm) - (read more here)

I recommend researching all the different supplements on your own if you're interested in taking them. If you are concerned about quality, please check out Dr Chang's website, all of them are available there, and I trust him.

Thursday, September 13, 2012

The Pleasure of Being Alive

I'm on hold with Jet Blue, figuring out flights. I still don't know when I'll be able to fly back home, but I'm paying for refundable tickets so it should all work out. I booked different flights for Dan already too, and that makes me really happy :) Dan's taking some time off for the surgery and recovery. It's a huge relief that Dan will be with me. He makes me laugh, nurtures me, and puts me at ease. I don't know if you guys remember, but after the last brain surgery, Dan would scoop me up and put me into a bubble bath. He would gently shave my legs and armpits. He coordinated over 80 pills daily, all of them falling at different intervals, even through the night. Dan did not sleep unless I slept, and even then he was so worried about me that he would be taking care of things around the house like food, or laundry, or just laying there softly cuddling me. I never thought I would be as lucky as I am. I never thought I could love someone this much. He's the most gentle and kind human I have ever met. He's amazing. This whole thing is crazy, but I'm becoming more and more ready, not only with the planning but also emotionally.

This is an amazing opportunity. It's the treatment that I wanted, with the best results. Originally, I was going to fly to Germany and do the same treatment. The only difference is that they were going to try and use my old tumor tissue, the one from 2.5 years ago. The problem is that the tumor tissue can morph. So, to have the best success rate you need the freshest tumor tissue. This clinical trial fell into my lap. It landed via email from my brain tumor fighting buddy Jessica. I had written off the trial because I thought that I had to do chemotherapy or radiation - or both - in order to participate. And now, here I am, I'm included in the trial, with the possibility of the absolute best results (I've read that the German treatment is 20% less successful). This trial does not come without costs. There's the cost of the brain surgery, hospital stay, all the medications, all of the scans (MRI, fMRI & DopaPET), all of the testing (pre-surgery language tests, cognitive tests, & surgery clearance), in fact I can't even think of all the costs at this point. The only thing that is free is the actual dendritic cell shots, of which there will be three. And, above the financials, there's the physical cost. We will not know the true amount until after the brain surgery has commenced. I won't feel comfortable until at least 48 hours after the surgery. Last time, I was fine when I came out of surgery, but within 24 hours I started to deteriorate. That's when my duramater peeled from my skull and a blood clot formed in the tumor cavity, and that's why I had to have a second emergency brain surgery. I'm keeping my fingers crossed that I won't have the same complications, or any complications for that matter!

I have to run out the door, literally, to a hair appointment. My final trim and tint before the surgery. I'm opting to keep my hair, although they have to shave it in certain areas. I'm hoping to do a Donald Trump comb over :) We'll see how THAT looks. I might get sick of the crusty blood in my hair and the scab could prove difficult in that birds nest, but it's worth a shot. Yes, hair does grow back but unless you've shaved your head you don't understand what it's like to be bald and to deal with the horrible phases of grow-out. It's something I'd rather not experience again. I probably sound silly, but there are things that you can control, and there are things that you cannot. I like to control my hair. I like having the option of wearing it curly, or straightening it, either way at least it's there :)

Could you guys do me a favor? Could you please, after you read this, choose to go for a walk, or a jog, or do a push up, take the stairs, park further away from your destination, and then take a moment to thank your legs, your feet, and your body. After the brain surgery I will not be able to run for quite awhile. I will not be able to get my heart rate going or it will cause headaches and such. It will take time for me to heal, to ride a bike, to hike a hill, to push myself. Over the past 24 hours I've ran 14.5 miles because I'm so grateful to have the option. I've been jogging around the lake, the neighborhoods, like a complete goober smiling at the dog down the street, and his neighbor the calico cat whom I respectfully named the mayor of Green Lake. I'm breathing deeply, enjoying the pain in my muscles, soaking up life. Please join me by doing something that gets your heart going. Please take a moment to thank your body. Please take a moment to truly enjoy being alive.

Wednesday, September 12, 2012

Scalpel, Skin, Saw, Skull

I've been mentally running around like a crazy person trying to plan this trip to UCLA. I have six different appointments already scheduled. I just got off the phone a little bit ago where the gentleman said that they won't schedule my post surgery pathology appointment because they will need to review the results and decide if they're going to recommend further treatment, like chemotherapy or radiation. Once they have their recommendation (hopefully NOTHING), they will decide if I need an appointment with Dr Liau or a specialist. Fingers crossed for just Dr Liau! Of course, I can always opt out of those treatments, but it's still a scary concept to acknowledge that the DNA of my tumor could have morphed into a higher grade. That's a very scary thought, one that only swims around the periphery of my mind, a possibility but not my current reality. It's important for me to not get caught up in the "what ifs." And anyway, I feel great! So there.

Can you believe I'm doing another brain surgery? It's almost exactly 2.5 years after the first one. That seems very quick, and yet, an entire lifetime. They're going to cut through my beautiful, unknowing, innocent little skull. They will use scalpels, a saw, and other tools. They will peal back my skin, pull off a portion of my skull. They will cut small nerves. They will dig around, separating the brain tissue and tumor. They will do all kinds of things, moving and removing things in the most intimate part of my body. They will be working on the area where my most inner thoughts and feelings, my genius and my ignorance are dancing. I speak of a brain surgery the way that most people discuss their grocery list, but here I am, getting quite serious. I guess it's time. After the last brain surgery, I never wanted to have to do another one ever again - and yet here I am CHOOSING do it. Crazy stuff.

I feel better than I have even from before the surgery, before the diagnosis. I hope that I don't have a major regression from the surgery, any type of set back - like death, or blood clot like last time - because I'm feeling fantastic, incredibly healthy, superhuman even :) I'm just so grateful for this opportunity, yet afraid as well. I mean, seriously, they're venturing into my brain. Yes. It's a big deal. I guess we'll just have to wait and see what happens. Gotta take risks in life in order to have success, and I do believe that this is an educated risk that very well might be the biggest success of my life. Why not believe that I can beat this? Why not believe that we can beat anything?

One of my favorite trees along Green Lake. I'm soaking up all of the beauty around the neighborhood, storing the images in my memory bank to fill me up while I'm gone in LA.

I love the flower memorial that has been continuously updated since they chopped down this sick tree along the lake. However, I'm quite confused because they're killing flowers in the process to recognize the death of the tree, doesn't that seem hilariously ironic?

Friday, September 7, 2012

Post NYC Report

My college roommate Jess. It had been 10 years!! So much has changed, yet she's still the sweet, sassy girl that I have so many incredible memories with. Aaaah, the ridiculousness of college. We shared a lifetime of laughter :)

Mom getting the hang of things

The appointment went incredibly well. I highly respect Dr NYC. He seems to be the perfect fit. He reviewed my entire case, and was able to recommend a few more supplements (printing out research proving the effectiveness against gliomas/astrocytomas). I shared my plan with Dr NYC, and we discussed pros and cons of my options. Ultimately, we mutually decided that the best course of action is for me to do the clinical trial, and continue on all of my supplements. Dr NYC and I will be in contact, and I will end up heading to see him again after the brain surgery, once I am healthy enough to travel.

After my appointment with Dr NYC, I immediately emailed Dr Liau to see if we could schedule the brain surgery. She responded within a couple of hours, and I now have the surgery on the books. My brain surgery will happen on October 18th, at UCLA. I'll need to travel little over a week in advance in order to complete all of the necessary testing, and I'll need to stay in LA for two weeks after the brain surgery to make sure that I'm healthy enough to travel. All-in-all it looks like I will be in Los Angeles for a month. Thank you to everyone who helped with the cherry fundraiser, for all of the donations, and the Crystal Seas Kayaking fundraiser. The money is going to be incredibly helpful! We're looking for a rental in LA close to UCLA so that my parents can stay there, then I can recover for a few weeks. Dan will be flying in every weekend to be with me....eeek....this is really happening!!!

As a final note, the most influential statement from Dr NYC was that he recommended the clinical trial since the results are so remarkable. He says that there's a chance that if I do the clinical trial, I may never need any further treatment ever again. It's not probable, but it's possible! The trial is still pending, and we won't know the results for years, but that's the point, patients are exponentially outlasting their "termination dates" - my words not his. There is a very good chance that even if it doesn't cure me, I wouldn't need treatment for years, and years, and years. This could be HUGE.

I'm terrified, and excited, and exhaaaaausted. So I think I will go nap. Love to you all! And thank you for always supporting me. Life changes so quickly around these parts, but one constant is the love from my friends, and my family. Thank you.

Monday, September 3, 2012


My first bus ride since the attack. I'm on a roll!!

Wandering around lower Queen Anne on my way to a girls only kayak trip

Hunting for harbor seals

Just after a paddle whack to Julia's face. It was an accident, I swear!

J & J conquer Lake Union

I'm so glad I'm stubborn! I just have to get my frustration level high enough to get moving. Yesterday, I hopped on a bus, meandered down through lower Queen Anne, and met my buddy Jules down at Lake Union for some kayaking. I have become sick of living in fear of seizures or panic attacks. Now that I've gotten myself running again, and can easily hit the grocery store by myself, I have become much more confident and I'm pushing boundaries that I haven't pushed in months. I've decided to get out and have as much fun as I can before the brain surgery. Jules and I even made a mental summer bucket list of fun activities to do. I'm so happy to be out doing things, conquering my fears, and laughing, enjoying the world around me. Life just keeps getting better and better!! :)

To Do (in no particular order):
Hike Mount Si
Rent bikes and explore the Burke Gilman Trail
Stand up paddle board around Lake Union
Rent one of the electric boats on Lake Union with a group of friends to watch the sunset

We'd better get to work! :)

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