5th Percentile? Ouch.

Yesterday was so much fun! I got the chance to paint the nails of a 100 year old woman, Margaret. She grew up in Cashmere, then in Anacortes, and finished high school in North Bend. Margaret is such a sweetheart. I just adore her. I'll be painting her nails each week. I'll walk up and put the basket of goodies on the table, then I'll go to her apartment and get her. She manages all by herself (except for her rolling walker). Margaret prefers her nails to be tapered, which she mentioned seems to be out of style at the moment, but she considers herself to be old fashioned. She let me know that she always picks the same nail polish called, Mud Slide. It's a shade of light pink/mauve. She likes her nails to have a french tip which makes it a little tricky. I painted her nails, leaving the white area at the tip. I was concerned that her nails weren't looking as good as they should, but as Margaret laughingly confessed, "It doesn't really matter since I can't see that well anyway, dear." How cute is that!

After nails I head over to the memory center. This is a secure area. The residents have memory issues, and if they were to get out of their residential area, they wouldn't know how to get back home. You wouldn't know it working with them though. They are the happiest, most jovial group. I join in the circle group of sitter-cise. It's exercises from a sitting position. We throw balls back and fourth, and play with a parachute. It's a lot of fun. They loved my purple ruffled ballet flats, and gave me a round of applause when I finally on the third go-around, remembered all of their names. Wow. A round of applause!?! I haven't had that happen in I don't even know how long. What an ego boost!

I had to warn Danny that there's a gentleman, Marv, in the memory care that's going to give Danny a run for his money. He's absolutely adorable, and even though he remembered my name, I kept forgetting his. He just smiled and said, "It's okay honey, it's a hard name." But the thing is, it's not a hard name! I've been visualizing all of their faces and one by one memorizing their names. I'm determined to call them by their first names next week. It'll be interesting to see if they remember me. This is such great practice! Seriously.

The other day my mom asked me to get the full file from UW so that we can read everything they've documented about my case. I just finished reviewing a report from my speech therapist, and I'm not going to lie, it hurt to read. I think I'm done looking into my file for a bit. According to my speech therapist's notes, "Reading - Assessed reading speed on Nelson-Denny Reading test for both reading aloud and to herself, her scale score was 175 and reading aloud 171 (both at the 5th percentile for her education level)." Ouch!

Before my brain surgeries, I was a smart girl. I was an A/B student. Especially in English courses in high school and college, I was at the top tier of the class. How ironic that I now have difficulties in the exact areas where I used to excel. The 5th percentile? The speech therapist never said that to me, which is probably good. That would have broken my heart. Now, it's just sad. I'm improving little by little, which is great and I'm so grateful, but my deficits still shock me. I'll bet it shocks those around me as well. I can type pretty well on the blog. I'm good at articulating how I feel, or what's going on around me. At least I have that. I can and do read, but the comprehension is pretty poor. I still enjoy reading though. I don't think you have to retain stuff to enjoy it in the moment :)

My First Book

This weekend marks my first night by myself, and my first weekend since the surgeries. Because I've been unable to take my pills regularly (I'd either forget I'd taken my pill, or accidentally eat too many), I've been untrustworthy to be alone. Finally, with the help of my speech therapist, I put my pills in an organizer and low and behold I am responsible!

With my new found freedom, I'm being insanely lazy. On Thursday night I started off on the wrong foot by getting sucked into a marathon of the Real Housewives of New York, and almost lost it but I saved myself by turning off the TV and starting my first book. Normally I prefer non-fiction, or historical fiction (ie: Grapes of Wrath...I'm a sucker for Steinbeck). There's something consuming about a good book, that television just can't provide.

So here I've been for the past two days reading my first book. I'm pretty sure that I'm not really retaining anything, but on some level I'm telling myself that it's good practice for my brain, and it HAS to be better than television. Right now I'm reading a cheesy fiction story, about as mind numbing as it gets but it's really fun! It's like a Devil Wears Prada kinda book. I guess life is so serious sometimes you have to lighten up.

My day goes about like this.....
I wake up in the 5:00am hour and read for a couple hours, and take my medication, and then I go back to sleep. At around the 11:00am hour I make a pot of coffee and read some more, or continue working on my crossword puzzle (which I've been working on for three days...speaking of which, does anyone know what the heck "Mas that baa" that has four letters "e_es"). Then I head to sleep. I wake up in the early evening to read some more and then maybe watch some 20/20, or something like that. Last night it was the Natalie Holloway story, good God that is a horrible story! That Dutch kid is guilty in my book and he's evil. Yep, I'm passing judgment. And now, it looks like he killed that young woman in Peru. It blows my mind that there are such disgusting people in the world. I shouldn't watch that kind of night time TV before bedtime while home alone. Anyway, I read for a few more hours and then go to sleep. Not bad! Talk about relaxing.

Things will definitely change next week though. Finally I'll be able to drive again....YAY! I feel like a sixteen year old again! Starting this week I will be able to drive with a companion. I should clarify that I don't have to avoid driving alone, and in fact now that I've hit the six week mark I don't have to limit myself at all. I could go drive doughnuts around the Safeway parking lot if I wanted to, but I'm scared that I might hurt someone. I figure, if I can't hold a conversation when there's background noise because I lose my concentration, how the heck am I going to be safe in front of the wheel? For now I'm going to slowly practice driving and take pointers from my co-pilots. I figure Danny, my Mom & Dad will all know if I'm safe enough to drive alone or not. It's obviously better to be safe than sorry, and I would never forgive myself if I hurt someone else because I had a hankering for some peach sorbet.

All of this reading is exhausting, but it's also helping me sleep and recuperate. I get the feeling that my family and Danny will be pretty amazed at my language improvement over the weekend. They will see the improvement in my speech, and I'm excited for them to see the renewed depth of my speech. I've still been the same person, I've just been unable to get my point across the way that I want to. It's a long process of growth, but it's getting so much closer to me, the REAL me!

My Own DNA is Fighting Me

Tomorrow is the fifth week since the second brain surgery. I'm growing exponentially. In fact, I can't believe how much I've grown. When I was in the ICU for the week during and after the surgeries, and I was starting to re-learn things I was trying to brush my teeth with the wrong end of the brush. I couldn't grip silverware, or if I could grip it, guaranteed it was the with the wrong end. I tried to read a sentence for the speech therapist and out of eleven sentences the only thing I could recognize was the word "orange." It was absolutely bizarre. I could recognize that the page was full of words, but I didn't understand what they meant. That was a shattering moment. I would lay in my bed in the hospital trying to read the posters on the wall. I would practice over and over trying to figure out what written, "University of Washington Hospital." I would try to sound out the letters, one by one.

I had been feeling depressed before I went out for our walk today and that's when Danny reminded me that I'm still pretty fresh out of the hospital. He reminded me that with my personality having to slow down, take naps, avoid work, limit stimulus, basically I feel like I'm being punished. I thrive off of multiple stimuli. I love a good challenge, and yet I can't hit this head-on in the same fashion that I normally would. I would probably just tackle my recovery like a job and bulldoze through it. Unfortunately, that is the absolute opposite technique that I'm supposed to use. I'm already feeling guilty about not being back at work, and that alone stresses me out! It's almost like my personality is attacking my body and hurting my progress. Just like it was explained to me by Dr Silbergeld, I have tumor cells in my brain that are attacking my brain. The tumor cells are created by my own DNA. So my own body is fighting me.

Mini Stewie

Two days ago, as you can imagine, I was thrilled to find a Mini Stewie in my garden (Stewie is about double the size. I don't know if it shows between the photos from the two posts). Here's a few photos. As you can see, I went a little camera happy.

Is he the cutest thing in the whole world?!?! Well. He was. Sadly, I found him dead in my garden when I got home from the speech therapist yesterday. We believe the neighbor's dog attacked him. Mini Stewie then ran through the fence and into my garden, where he died.

The worst part is that I was so excited when we got home that I was looking for Mini Stewie and I found his dead body. I loved him. It's amazing how much you can love something instantly and become attached in less than 24 hours. I was so devastated yesterday that I couldn't even bring myself to get on the computer.

Yesterday, while I was mourning for Mini Stewie it occurred to me that just because you love something, like the bunny, doesn't mean that it will live. I hoped that the bunny would be safe around the neighborhood, and grow old to have Micro Mini Stewies. Just as I was hoping to enjoy Mini Stewie for a long time, I'm realizing that my whole life is going to exist on hope. I hope in two months I'll have a clean MRI (and then the next MRI after that, and that after that). I hope that I won't need radiation and chemo therapy. I hope that the rest of my existing tumor won't grow fast. I hope that I will beat the odds for the seven year average. I hope that I never have to spend another week in the ICU. I hope. I hope. I hope. I guess that this is my life.

I realize that wasting time worrying about the "what if's" in my life is just what it is, wasting valuable time, but at the same time I'm human. Of course there will be times when I'm going to worry. Maybe I'm just looking at the word "hope" with the wrong connotation. Maybe I'm starting to associate hope with fear. I don't know. I just feel so vulnerable.

Progress is Found in Odd Places

I have a confession to make. I've been procrastinating about my homework and helpful tasks. Although, I'm counting some of my helpful tasks like right now as Danny is watching the season finally of Lost and I'm working on my blog. I figure that this is great practice trying to focus on an activity while there are distractions going on around me. See, I'm pretty good at reasoning to myself that I'm actually doing productive things!

I don't think I ever said the results of my testing from my speech therapist in Wenatchee. The most glaring score was for my attention span. On a median score of 100 I had a 42. Ouch. This is why I lose focus, and can't complete tasks. Even a ticking clock can confuse me, and lose my train of thought. It is such a joke because before my surgery I have always been juggling several things at time.

It is also why I am really horrible about emailing, and facebook and I'm really sorry about that! Sorry guys. And, while we're at it, I also apologize that I don't much use the phone. I've called my grandma once and I've talked to Kaal every several days but that's pretty much it. It is insanely hard to talk over the phone. I do pretty well when I do face-to-face communication, but it really limits things between my out of town friends. I hope every knows that I love you guys! It won't always be like this!

It's weird, writing the blog is so helpful for me to work on my vocabulary and organizing my thoughts, but it's almost like cheating because my blog writing is a lot better than my verbal communicating. In fact, I think my blog is vastly better than my off the cuff verbal communication. It's a pretty wild sensation or maybe I mean realization when can't get my words out. Maybe I don't know what word I want. I have that happen a lot.

Ok. Enough trying to work on distractions (Lost) and blogging. I feel good about the results! About a week ago I wouldn't have been able to do my blog with the TV or any distractions. Progress is found in odd places!