The Carrolls meet THE Carroll

I've been up since 4:00 am and it's all because of a seizure. I've had a seizure in my sleep before (according to Danny - I don't remember it), but on September 11th, just a few days ago, just at the same time as the anniversary of the twin towers collapsing, I was jolted out of bed, screaming to Danny that I was having a seizure. He jumped into action, knowing fully what to do, but I couldn't stop myself from screaming, "Water, pills, water, pills, water, pills, hurry, hurry!!!" It was like I was in a trance. A trance where you can't feel or move your right side. A trance where you have no control over your body, or your mind. It was powerful, but not a grand mal. My whole right side, from the tip of my toes to my cranium was tingling and throbbing. I was paralyzed, even unable to drink on my own. Danny held a glass to my mouth as water sloshed all over my face and neck, soaking our mattress. When the seizure subsided, I couldn't talk or think or make sense of what had just happened. So here I sit in the dark while most people sleep. I don't sleep because I'm afraid to. I don't know how long this fear will last, and I know it will abate, but I wonder if this new experience will stick with me forever. Will I always have a deep-rooted fear of a sleep seizure? Is this going to haunt my dreams, nestle into my subconscious?

Ever since I was diagnosed I've been afraid to miss anything. I want to soak up life, to enjoy every moment. But sleep is paramount too. I'm not sure what I'm going to do about this new found issue. I live life big. I laugh and jump and dance (albeit ridiculously), but I'm fearful too. I may be the happiest yet most terrified person on Earth. I'm scared every single day that the mass in my brain will grow. I'm scared every single day that I may be one of the ones who die young and I won't be able to stop it. I'm scared every single day I'm eating the wrong thing, drinking the wrong thing, putting the wrong product on my body (the toxins), that I'm too near the wifi, that our water has too much crap in it, that I'm not exercising enough or that I'm exercising too much. But what permeates the most in each moment is that I'm scared every single day that I will have a seizure. And now, to add to the list, I'm scared that I'm going to be woken up mid-seizure. It's like waking up to the fire alarm, but it's not a drill, there's a literal fire in your brain, and it's surging through your body. And when it's over, you're ravaged. You're wiped. You're almost ruined, but you know you have to rebuild. And with any disaster, it's the aftermath that takes the most work.

The irony of everything is that I was jolted out of bed with that nasty seizure on the morning I was to go to a Seahawks practice. The day I was going to meet coach Pete Carroll. Dan was temped to cancel because I wasn't making sense and my face was droopy, but I begged, and I pleaded, and he tilted his head, squinting, and said okay. The unfortunate part is that one major side effect of my seizures (although I'll bet it's common with many) is memory loss for about 24-36 hours. So, being the stubborn cuss that I am, not wanting to miss out on the opportunity, or wait one more day to meet Coach, that I will have to work very hard to remember our special time at the Seahawks practice. The whole day was surreal. I shook hands with Bobby Wagner. (What? Yep, that happened. He may be my new favorite.) I watched Beast Mode get stretched out right in front of me. He was talking - I saw it. I watched Sherman bounce around from crew to crew. I noticed Russell working on the QB stuff, I could see the smoke drafting from his ears with the laser focus. I chatted with the Seahawks crew, and laughed. I tried to push one of the things that the linemen push, the metal things with the pads that simulate the opponents, and I'm pretty sure I moved it a millimeter. When the practice was over we talked with Coach which was awesome! There's an amazing familial vibe, a camaraderie. Everyone was jovial, but dialed in. I joked about how I wanted so badly to run out there and jump in, to race anyone who was willing, but of course I stayed on the sidelines. We were the only onlookers that weren't part of the team or media. It felt crazy, and profound. I have a deep respect and love for the way that Coach Carroll handles the sport, the players, and life. He practices with the players, running around, sweating like the rest of them. He believes everyone has the chance at greatness, his motto, "Always compete."

The older I get, and especially since I was diagnosed, I don't enjoy competing as much with others (maybe it's because with cancer, we can't all win and it's not our fault - it's often out of our control), but my internal competitiveness has never gone away. It's what helped me strive to learn the alphabet, and talk, and read, and write again. It's how I was able to start walking as soon as possible, aided by Dan, and my friends and family. I always knew I could do better, that I could do more. And I still look to challenge myself (even if it turns into a hysterical near disaster like the recent triathlon). If life was a drink I would gorge myself, while trying to jumprope and cook dinner and garden and read a book and run in circles. I want to do it all as much as I can. But in order to recover from all that madness first, I'll have to get over my seizure fears, and just get some sleep.

The lair.

Wait, what's that? Oh ya, we're here with Pete. 

An O'Carroll family photo. 

My, I can't believe I'm at his press conference face. As he walked away, he jokingly said, "And any further questions to you Dan and Jess?" Ha! Good one Coach. Yep, Pete Carroll knows our names.

The TSA checking the busses, and gear so that the team can just roll up to the plane. They were flying out to St. Luis when we rapped up. Go Hawks!

Germany Again? Excellent!

I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?

I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.

Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.

I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.