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!

Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.