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.

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?