Surprise!

Who is the sweetheart that sent this package?! It didn't come with a note....

Regardless, THANK YOU!!!! :) What a wonderful thing to do! 

WPIG Annual Art Auction

Good Evening! Thank you for all of the kindness, and patience as always during my seizure hiatus. You guys are all so wonderful!!
 
Seizures are down; I'm doing good. The other day, you might notice, I created a new box in the upper right hand corner of the blog. It tracks my progress avoiding attacks (seizure attacks, not maintenance man attacks - ha!). As Dan would say, I always have to have a competition. I love to see if I can break my own records. It's really just a mind game, a distraction. And, when you break your records, you have something to celebrate. :)

I'm disappointed that I had those two seizures on Monday; am I ever going to be free? It's really not that big of a deal, the tumor is obviously the main issue, but man, wouldn't it be nice to not have to worry about having a seizure? I hate it when I can't control my body, or my mind. And it's more than hating the loss of control, it's literally terrifying. You don't know where the energy of your mind is escaping to, but you can't access it. And seizures aren't harmless. Not only can and do they damage your brain, I also know brain cancer fighters who have died from their seizures. Whatever the hell they are, they're nothing to mess with. Like the power of the ocean, it's important remain reverent.

I have a healthy respect for seizures, but I won't live in fear, so last night Dan and I went out with friends to the Women's Philanthropic Investment Group Art Auction. You may have heard me mention it before; I donate a piece of art every year. This year supported YouthCare, to help homeless teens. I wasn't that familiar with the organization before, but by the end of the night I was really impressed. The founding story, and what they do is absolutely amazing. It didn't hurt that it required me to get dressed up and out of the house to see bunches of our friends, but it was also exhausting, and I'm afraid I picked up a bug from the crowd. My throat hurts like nobody's business. Dang it.

In general, I feel like I'm getting better and better about bouncing back from seizures, and because of my trip with First Descents, I take calculated risks so that I am out living life. I may even say that I might be getting the hang of this tumor/seizure life. Knock on wood! I feel like I probably just jinxed myself. I hope not.

I can't remember if I mentioned it or not, but the final MRI results, which is UCLA's review, will be available on this Friday. Fingers crossed they agree that the tumor is stable. Truthfully, I panicked when I read UW's radiology report where they measured my tumor area at 4.1 x 1.2 centemeters. I never want them to measure anything. It's just like how you never want a doctor to call you back quickly after going in for general testing.

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

Findings:

There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Impression:

Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well.