Thursday, May 27, 2010

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.

Tuesday, May 25, 2010

Hair Envy

Pantene shampoo commercials are taunting me. I'm seriously starting to get hair envy. I've had long hair my whole life, and I'm starting to realize that it will take several years to get back to my normal hair. Ouch. It's the little things that ground you back into reality. Oh well. Worse things have happened...literally.

I wonder how my hair will grow out with this massive scar. I'm I going to be able to comb-over my scar like Donald Trump? I basically have a center part due to the scar, but I'm more of a side part kind of girl. I'm not going to lie, I seriously worry about my hair. Foolish, yes, but I am a woman, and us women want to feel attractive.

Seriously. What the heck am I going to do with this scar? The good news is that my makeup covers my braille face. And it's getting a lot better. I guess I need to deal with one crisis at a time. 

Did I mention that my first brain surgery was an awake craniotomy? I keep dreaming about the part of the awake surgery, the conversations, what it looked like, the whole thing. I've got to tell THAT story. Now, for a nap.

Monday, May 24, 2010

That's Pretty Tacky

First of all, feeling guilty, I completed all of my assigned homework. Surprisingly, it really wasn't bad, and I might even say that it was kind of fun. I'm sick like that.

On to a pretty crazy story. I heard back from an email today from the Wenatchee Brain Tumor Support Group. I was hoping to find some comrades, or like they said, a support group, but within the first sentence I realized I was sorely mistaken. It turns out that the support group was consisting of three members, of which two have passed away in the past two months. The surviving member asked me to head up the support group and contact local doctors from the area that might be interested in helping facilitate the group. I feel bad, but I don't feel up to putting another a ball in my rotation. I guess she needs help, but unfortunately I went to the support group because I was needing help myself. Ordinarily, I would gladly jump at the chance to help someone solve a problem, or devote my time but I'm just trying to function. Maybe in a year I can help spearhead the support group, or at least help out. It's hard to say "no" both myself, and to someone else, but it's what I have to do. I hope that the final member is doing alright. 66% of their group is quite a hit. I can only imagine how hard that must be for her. These two members were people. They had family, and friends. I guess this isn't a pretty crazy story, it's just a sad story. Not the ending anyone wants.

The worst part is that I was originally trying to find the humor about this. I told Danny and my mom that I tried to contact the Wenatchee Brain Tumor Support Group and that two of the three members passed away in the last two months and I said, "Not a very good selling point." That's pretty tacky. I guess when we deal with the unknown (like the future of my brain tumor) we try to lighten the mood, or at least I do. But it was still pretty tacky.

Sunday, May 23, 2010

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!

Saturday, May 22, 2010

Flour Sack Babies

Hi Guys. Sorry I've been so depressed. They say that this is a roller coaster of emotions, and I now understand what they mean. When things are good it's fantastic, but when I'm sad it's incredibly hard. I get mad at myself when I'm depressed because I know I have so much to be grateful for, but sometimes I can't stop myself. Thank you to everyone who supports me. This blog has been a wonderful outlet for me, and I'm so grateful for all of the comments. Sometimes it's just the thing that pulls me out of the dumps. So thank you!

Today I woke up feeling fantastic, I love it when it works out like that. Danny and I planted a bunch of bulbs that I had been saving from before I found out I had the tumor. There are now 30 green star gladiolus, 30 black star gladiolus, and a 10 mix of dahlias. Planting things, and gardening in general is so relaxing. It's so simple, give it a little love, some water, and tend to them a little. My plants are like little babies for me, I love to watch them grow. Gardening is obviously a lot easier than parenting, I'm not implying that. Maybe gardening is just phase one - preparenting, kind of those flour sack babies that they used to make you have to heave around high school.

I also had a wonderful surprise from my mom.  Apparently my mom has been researching brain food. I will be getting a care package of food from my mom and dad of fish, spinach, blueberries, cherries, and I can't remember what else is on the list. My parents are awesome! I will do whatever it takes to help strengthen my brain. As long as they don't take away my red licorice! Let's not get crazy here.

Anyway, I'm serious, thank you to my friends, family, and strangers that have been contacting me. I am so grateful for all of the people that continue to send prayers, love, support, stories, hope, and strength. Just when I'm feeling down, and I can't handle the pain, someone sends me an amazing email, or comment on the blog, and I start to feel better. Thank you! I'm such a lucky girl that I have so many people rooting for me! Thank you!

Friday, May 21, 2010

Stewie The Lucky Rabbit

Danny and I have a new friend, which I named Stewie. He is cute, and yet he is a pest. He's started munching on my plants! We are just about to start our vegetable garden, and I KNOW Stewie is going to go to town on my plants. But what I can I do? He's so cute! I watch him from my window and he seems so harmless.

At least Stewie will probably avoid the jalapenos, and habaneros. I'm more worried about the tomatoes. Oh well.

Thursday, May 20, 2010

Brain Drain

Maybe it's the fact that I purged myself a little last night with my tears, or maybe it's the fact that Danny got back late last night but I'm feeling a lot better! My skin is still disgusting but I'm starting to get over it. Maybe it's kind of like physical pain. There was a point at the hospital when they had to pull the drain out of my head and they didn't give me any pain killers or anything. I was grateful to have Danny there while I screamed bloody murder and sobbed. Just so you know a drain is a tube coming out of your brain that collects blood in a circular expandable container. They have to empty it a few times as blood has too much blood in your brain. I had the drain because of the second emergency surgery when my Dura hardened. That was scary. Anyway, the drain has to be removed, and they just start yanking it out of your head, and it hurts like nothing I have ever experienced. There was about 18 inches of tubing that was wrapped throughout the inside of my head. They just keep yanking and yanking and yanking as I screamed and cried. Danny said that it was the most disgusting and painful thing he has ever seen, like something out of sci-movie. At least Danny said that I am officially the strongest woman in the world. I guess I really went on a tangent during this story. I was just talking about the fact that the memory of pain really does lessen over time. Thank goodness. If we remembered everything forever we would probably never want to do anything!

Here's another story about my second surgery. After the first surgery I did well at first but I started deteriorating rapidly in the following hours. It scared my dad, and he started talking to the doctors. He kept telling the doctors that he knows me and things aren't right. He noticed that I didn't want to be touched, and dad knows that I'm a normally really affectionate. Then I started getting to sensitive to light, and then my right hand became paralyzed. When the doctors saw the lack of function of my right hand they immediately jumped on the game. Within seconds I was signing papers to head back into surgery. They were literally running through the hospital and when I and I saw their faces I look, especially the Chief, I realized how serious this was. Looking up at all of their faces was so scary. They were immediately putting the gas over my face and I remembering thinking, "there is nothing I can do, I'm at the mercy of the world." Later I found out that the Chief Dr Silvergeld was at home and rushed back to hospital for my surgery. He rushed back for me, and probably saved my life. I'm so grateful for the doctors, and for my father, that he knows me so well.

I think, looking back on my experience, that I'm starting to digest just how serious these several weeks have been. At first I was just so grateful to be alive, and I still am completely grateful that I'm alive, but now I start to realize all the little details. It actually makes me even more grateful for my life! But when you see me, you will recognize that I am not me. I'm me typing, but not me in real. I can't express myself or say such big words in real life. This is a special place in my brain that is not the same as talking, or writing. I can type even these posts take several hours of trying but it's not how I talk in life. But I will. This will be better.

Wednesday, May 19, 2010

My Turtle

I've been out at my parent's house for a few nights as Danny has been trying to sell his truck in Seattle. They helped me take all my pills at weird hours and put up with my depression about my current skin crisis (among everything else). Thank you mom and dad.

The good news is that he did it it (although it was several thousand dollars backwards - but at least we can work with that). He sold it! We are now a one car family. Danny is moving in me to take care of me, and we will be starting an a new adventure. I'm very grateful for him. Danny has been trying to get rid of debt and consolidating things and I'm so proud of him. Danny is a wonderful man. He's even helping me sort through paperwork. The bills are barely beginning. We are just starting to get the MRI's from the very first appointment in Wenatchee. This progress is going to be a long one. I guess I have a few years on average for the next tumor or next treatment (if I'm lucky - and I feel really healthy!). So by then I'll probably pay for the first one and deal with the second then. I really don't care if I have to pay medical bills for my whole life, I just want to live!

Anyway, I should go to bed I think I'm starting to get foggy. Life is really complicated. I'm really grateful that Danny sold his truck. I know it sucks to have to drive my "turtle" but I love my turtle and it doesn't have a payment. So although it's not very cute it is free and I can sleep with that at night.

Tuesday, May 18, 2010

The Last Straw

I could handle the news of the tumor. I could handle the first surgery. I made it through the second emergency surgery. I could handle the awkward stage of my hair that is starting to resemble a Chia Pet. I could handle the massive scar and scab that runs from next to my ear and across the center of my skull all the way to the base of my head/neck. I could handle the steroid rashes and pimples across my chest and back, since I've been hiding them with turtle necks and scarfs. However, I can no longer handle the rashes and white bumps that started showing up yesterday morning across my throat, chin, cheeks and around my mouth. Sorry. I know that this is disgusting, but I have to purge these feelings. This rash all over my face and neck is over the top. It is my final straw. I'm so disgusted by myself. Now that my face looks like a freak, I can't even find something nice to say about myself. It's just too much. I just want to cry. My throat keeps tightening up, and I know it's just a matter of time before I completely lose it. Everything in my body is fighting me. Usually I would go for a run, but I'm not even allowed to attempt such a thing. I'm at a complete loss. I just want to curl up in my bed and cry. My skin looks like braille. I just want to hide under a rock.

I did make it to my speech therapist today (I was supposed to meet for an appointment on Monday but there was a schedule conflict). She seems like a sweetheart, very encouraging, supportive and has a great smile and a great laugh - very important! I did surprisingly well during the basic tests - at least I'm happy with how I did. We will meet together on Thursday for another test and from there she will start giving me homework. I am scheduled for speech therapy, with two sessions a week. We're on our way! I'm so glad we found a great fit! Now, if only I didn't have to be in public. Or if I could just find a stylish paper bag for my head.

Danny went to Seattle yesterday to try and sell his truck. Maybe I can just scrub off the first few layers of skin before get back.

Monday, May 17, 2010

Going Slowly

Today, in Wenatchee I have an 11:00am appointment to meet with another speech therapist that specializes in brain injuries. If the therapist is a good fit I will be living at my house and doing therapy for the following month. It was really relaxing to live at Laura's house and I loved being in the city, but it will also be nice to be close to my parents and do silly things like weed in my garden.

I'm interested to see the second therapist and see what she thinks about my baseline, and what I need to work on. I really hope that this woman is going to be more encouraging, and hopeful. If I'm going to be working with a person for a month I really want a teammate. I might find out that like the UW they just don't want to get my hopes up (regarding my growth and expectations), but I WANT them to get my hopes up. Kind of the way a man is supposed to tell you that your jeans don't make you look fat - sometimes you just want to be lied to.

I have confession to make. I completely freaked out two nights ago. I was exhausted and run down (probably from traveling over the pass) and I had a complete meltdown. Poor Danny. By the end of the night, I was so tired that I could hear that Danny was speaking, and I could see that his lips were moving, but I couldn't understand what he was saying and I completely freaked out. It was the scariest moment of recover so far. My brain just completely shut down. I guess I'm still not back to normal. I keep thinking I'm going to wake up one morning and be back to my regular life and personality. It just doesn't happen like that.

After being terrified, thinking I was losing my mind and going backwards in recovery, it was perfect timing that my friend AJ shared a story this morning in an email. I was needing some insight. Here is what AJ wrote...... "So I have a patient who's daughter has had 3 craniotomies (all before she was 25)... and this is her advice for you 'take it slow, real slow, the slower you take it this first year, the more energy and function you'll have all the years after.' " (I have no idea how fix the punctuation - I used to be so good at this stuff. Oh well - you guys get the jest of it). Can you believe this poor girl!?! See - my life isn't bad! Three craniotomies by age 25? I love hearing these stories, especially advice on how to deal with things and how to go from here. I would normally power through things like a work horse but after hearing from people that know more than me I will gladly do what they recommend. I want to be better. I'm just grateful that people will share their knowledge and their stories. So, I'm going to take it easy. I'm going to try to relax and calm down. That's what I'm going to focus on today, going slow.

Sunday, May 16, 2010

Heaven In A Tub

Today I was trying to take a nap and I was thinking about how much I love red licorice. I might even go as far to say that red licorice is the best candy ever invented (not to be confused with Twizzlers). I am aware that this post is probably a little disturbing, and that no one should be that excited about a candy, but something so chewy and delicious should be celebrated. 

For weeks after brain surgery my skull has been crackling like Rice Crispies (when you pour milk on them). It's intermediate, so I can't complain too much, but when it starts up suddenly the sound will make you lose your mind. It is the craziest, creepiest, most irritating sound. Apparently, it's completely a normal sound to hear, but it's still unsettling. At first when I didn't know what was happening I thought that my skull was clasping. The crackling has gotten loads better, but at first it was all the time and I would even wake up from a deep sleep to the crackling. It was from weird movements or bending over to tie my shoes, or sometimes I wasn't even moving it was just air bubbles in my head (my brother is going to have a field day with this one). Just the thought of the crackling and I would feel nauseous (I'm a complete wimp when it comes to the idea of my skull, the surgery, the metal plates and screws and the whole fact that they cut open my brain in general - I guess I'm grossed out and yet I think it's the coolest thing in the world. Kind of like witnessing a car accident.) Anyway, the red licorice is the perfect combination of chewy and soft. Sometimes at 2:00 am I even would walk all the way into the kitchen for some chewy red they heaven they call licorice. Sometimes it's the only thing that can quiet the sounds in my head (and my jaws were cut for surgery so they could open the head larger). I tried gummy bears but it they were too chewy. I tried jellybeans but I ate them too quickly, and gum wasn't soft enough. I tried candy after candy all in the name of medical research I am confident that red licorice is the best candy for brain surgery. It helps the crackling and it seems to help to my jaw strength, and it's so soft and chewy, I'm telling you it's heaven in a tub. Unfortunately, I have recently been getting dirty looks from my thighs but I'm getting a lot better at shrugging them off. I just don't care about silly stuff like thunder-thighs. That's what summer dresses are for.

Saturday, May 15, 2010


I'm home! My first night back home in Wenatchee! Danny I went out to my parent's house for dinner, and we visited a couple of hours. I hadn't seen them in eight days. That's practically unheard since I normally work with my parents very day. I don't know how got so lucky with the parent lottery, but I serious the luckiest girl the world. Dad just keeps giving hugs, he said he can't stop giving me hugs because he's so happy to have me alive, and mom just give me sparkly look and smiles non-stop. I put  fear in them through his ordeal, now that we can rest better I'm glad. My poor parents have really gone through the ringer! And they worried about the middle school years!

It's beautiful morning and Danny was abducted by my dad a about an hour ago with his buddies Rich and Ron go golfing. Danny was little nervous because he's pretty new at golf and he didn't want to hold back the guys, but it think they're going to have a blast! Pretty sweet guys to get him out of the house. I worry a about Doctor Dan because I have be exhausting and monotonous. Although, if he feel that way he doesn't show it though. I actually had to have a talk to Danny and apologize yesterday. He didn't even want me to apologize, he said I shouldn't even worry about it - but the truth is that I worry about my character. According to speech therapist, I don't have filters and I'm blunt. I don't like that. I don't want be too blunt. I want to be cognizant of people's feelings. I had no idea that I was so direct. Before this tumor I've always thought about who I want to be, how I want to treat people, and what character traits I want to emulate, and harsh isn't what I'm going for. Just a few more things to concentrate on. I know that I'm in charge of who I want to be, now that I can recognize what I don't like, I can change it.

Now some good new. I have FINALLY cut back my pills down two seizure pills twice daily and that will be for two month, and then I have the rest of my pain killers that I am weaning off. Yay! It is the far cry from 2-8 pills every two hours. Needless to say that completely wrecked any possibility of decent sleep. That's behind me now though!! Things keep getting better and better!

I still can't believe the surgery, most of medication, most of the pain, and fear are most behind me. This really wasn't that bad. I have to convince myself to take this whole thing seriously. It just doesn't seem that bad. The scar gnarly and that pretty undeniable, but I'm feel better every single day.

I'm not going to give up. Thank you all of the comments. Sometimes when I hear big new (like the speech therapist) it can hit me pretty hard they doubt my success. I don't know what to expect, I guess know one does, but I feel in heart that I'm going to be back myself. I'm not quite there, I'm usually funnier. I soon.

Thursday, May 13, 2010

My Computer Is Sick

Well. Bummer. My computer got virus, and that why I haven't been able do post. Sorry guys! I need computer doctor! Hopefully can find someone in Wenatchee to take for a look. Thankfully we had to do some laundry and I'm borrowing Krieg's computer. Thanks Krieg! Luckily I heading home for the weekend to see parents. Haven't been seen them sense last week! I miss them CRAZY!

Lots to tell. I finished up physical therapy. actually closed because of lack insurance courage (too expensive), but I'm confident about physical progress. That's exciting! Danny and I take a walk (sometimes twice a day) and stretch the legs. I've got bunch of different inner ear exercises, nothing too complicated, little things like balance. I realized my walk yesterday that I can't even swing a bat for a few months. No homerun durby. Oh well. Let the boys win a change. He he!

Today was my first speech therapy. That eye opening. We did some reading comprehension and I guess I had 50% success rate. I did object recognition, recognizing pictures and naming them. It's ackward look at image and no recognize it. One task I read article and tried reiterate I heard and again I believe they said I about half of the concept and details. Not bad. It's wild that I'm only understanding half I'm reading, and hearing. When actually read silently and then answered the questions about reading I only understand half of the article. I thought I was 100%. Oops. I thought I was undersdand EVERYTHING.

These tests every insightful. I apparently have a short attention span. I lose details, and larger concept. I can't understand jokes (sorry dad). After around thirty minutes of trying have a conversation a task I get exhausted and pretty lame headache. I can really confused if there are multiple things going around like TV and converstation, music playing and someone asks me question, or phone rings. Actually, if there is more than thing one going I lose my thought concept. That's why has been so great just limit my enviroment. And yet, the same time it's nice see how I function society or my lack function (like the checkout counter...that's a story for another time).

The scariest thing about therapist was response to my situation. I might have been a little fiesty when left. The speech therapists said that I'm right the middle (and closer the end) of my steep learning curve that soon will things will be harder. I told therapists that I'm going make full recovery, and they looked like was crazy! They even said it front of Danny, "Well. Good for you, that you feel that way." I am so subborn, and I WILL back to normal. I have to get better! I HAVE TO GET BETTER. I can't even imagine little brain slowing down and stopping. I'm really curious and hardwork woman. I can't imagine giving up and settle for subpar cognition.

Like said, I have a lot think about. I'm not going give up. I'm not going settle. If it has to be a long slow road then will deal with it.

I can't except that my brain might not better.

Tuesday, May 11, 2010

Am I In Denial?

I'm not sure I'm grasp reality. I tried to do much yesterday, and by the end of the day I didn't make sense. My words stopped properly and legs started clamping. I have tendency to walk around house without cover on my scar because I only look my eyes in the mirror so I kind forget what's going on top my head, and in my life.

I keep thinking that being lazy. I feel like I should be working with my family back warehouse. I'm not quite sure how dial back my energy but then I really get really confuse and exhausted. It's such a challenge step back, and breathe. I want to go for walks, and practice my reading, and writing, and speaking, but just crash. I used to do when I was a kid. My mom would find me sleep passed out on the floor. Always fighting it. I would crash. Bet it was pretty funny to see.

Good thing I've got doctor Danny. He is really patient, and he understands that want to a million things all at once, but at same time he knows just how slow me down. He just makes me laugh and smile and walks me back to bed, tuck me down, and sleep. He sweet to me. I now have a nap 10:00am and 2:00pm nap. I can't believe I sleep so much and I sleep so hard. And he right, because my head hits the pillow like rock. I'm just stubborn. It's nice have him help me take care of me. I don't know what I would be doing right now. It was scare when Danny first lost his job, but now it has been such blessing. Perfect timing. I was worried about money first (probably understatement), working on budget, and cutting back to everything, but after when we got the news about the tumor, we're just grateful that we have time together. It's perfect! Money even matter any more, and I've always been such worrier, but life has amazing way of leveling you out and getting things perspective. I have complete peace about money. For those of you know my worry nature will make them very happy. No stress. Life just going to come it comes, I don't need much, and I have the love my life to make me laugh. We have two great cats and rowdy little dog and we can happy any situation our way. It's freeing life!

This the world making me slow down. I've going, going, going for years, and has been a lot of fun. Now, I trying to exercising restraint. I'm learning much. I love hearing stories about everyone lives. I'm especially excited about Lacen's little baby girl just got a heart transplant, exciting is that! There are so many great victories!

Sorry, this post really jumpy. I have much to think about. I still don't feel I had two brain surgeries. It really wasn't that hard. The hard thing being patient and waking up brain, but that a really easy job. I just have be patient. It's almost like cheating. I don't have to go work. I live in a beautiful bubble where float between nap times try to wake up my thoughts. Everyone should get to go through, it like a vacation! I'm spoiled. I'm even starting feel guilty!

Sunday, May 9, 2010

The Mind Plays Games

Today I practiced more reading. I'm notice some interesting things. When read silently to myself I think can read anything I see. I can now start to manage huge words, recognize them, and most understand their meaning. I see all words, large and small. Yet, when I read loud I'm not reading words that are on paper. Also have a terrible time sounding out words. Two syllables max. And actually that be generous. It's wild. My brain playing tricks. I miss multiple words from paragraph, or I insert words according to Danny the words don't exist. He so patient with me.

It's crazy to flip from read alone by myself, because think I'm just reading, but if I'm not reading right in front Danny we can't be sure. Weird. Ignorance is bliss I guess.

Saturday, May 8, 2010

Work Hard Play Hard

Today was beautiful. Danny helped me practice my writing and reading. We took in some sunshine at the beach to relax. Heaven.

Abu Jess Is Home Safe

Abu Jess is back home and safe. She was a wonderful nurse. I so grateful for her laughter, and patience.

I can't explain what friendship means to me. More than a sister. I love she got angry this tumor. How dare tumor!! Those were her words. We conquered this battle now I'm working through the mess but back to normal in no time. I learned so much from Jess. She selfless. She an angel. I'm privileged and honored that have Jess in my life. I the luckiest woman in the whole world!

Friday, May 7, 2010

Good night.

Hi Friends. I feel smarter since nap noon. I try practice my sentences. My brain starting to wake up which excite. I'm positive that the next few day and week I will killing in no time! Lucky I'm hard head and refuse give up. I love write. I'm be just back I used be. Ok. Sleep soon before Danny before gives me the look before. Good night! Yay!

Before go. out my the staples in my head! Yay! I shower tomorrow! Great news!!!

Thursday, May 6, 2010

Four and a Half Years Huh?

Hello Everyone,

This is Dan taking over the blog duties as Jess Zapiain has returned to the UAE. We had our first follow up meeting with the Dr's since leaving the hospital and got some good news and some bad news.

First the good news. The biopsy report on Jess's tumor came back and she was diagnosed with a grade 2 tumor, which is the best possible grade, considering grade 1 tumors are reserved for children.

Now the bad news. The Dr's were unable to remove the entire tumor because it is integrated with Jess's brain in such a way that removal of all the tumor would require removal of her functioning brain as well. Because there is residual tumor left over, there is a almost certain chance that the tumor will grow back. The Doctors say that the survival rate for someone her age with an astrocytoma II, with such a large volume and mid-line shift is 4.5 years.

To combat the regrowth of Jess's tumor the Dr's are going to be continuing to monitor and evaluate her. Jess will receive a MRI in three months to make sure the tumor is not growing at an unexpectedly rapid pace. After that, there will be MRI's every 3 months for a few years and will eventually be reduced to semi-yearly checks. The reasoning for the frequency of the MRI's is to try and catch a regrowth of the tumor as soon as possible, which makes it easier to treat. This tumor is something that is going to affect Jess for the rest of her life.

Jess attended her first physical therapy session today and did very well, and was scheduled to attend physical therapy sessions three times a week. She will be attending her first cognitive therapy session next Thursday, and will then begin a similar regiment to that of the physical therapy. She also has an appointment tomorrow to remove the fifty two staples in her head. Needless to say, she is not looking forward to this at all. I believe her exact quote was "I so done with pain".

Jess has a long road ahead of her that will be very difficult at times, yet she still carries herself with the combination of goofy-ness and grace that we all know her for. She continually talks about her amazement at the outpouring of support she has received from friends and family.

Jess just asked me to let everyone know that she is blown away by every one's generosity. Every day she gains inspiration from overcoming challenges. She's so happy from all the success! Thank you friends! :)

Tuesday, May 4, 2010

Keep Walking

Jess' words, as dictated to Danny:

"I'm happy be at Laura with family. I'm grate alive. They scary, a week ICU. I'm still scare I cant read write and confuse. Hap alive. So lucky am. Even though scare I'm happy. Its long road but i got the road I walk."

Monday, May 3, 2010

Home Sweet Home

Team Jess -

Well, it took a little longer than originally expected, but Jess is "home". Laura's adorable house is the perfect recovery cottage, and Jess is loving it. From here, she'll work with the UW outpatient rehab clinics for the next couple of weeks before returning to Wenatchee.

She would like to thank everyone for all the amazing positive energy, prayers and warm thoughts during all of this. She's not quite ready for visitors, but she will let you guys know when that time does come.

Until then, we'll be laying low, taking it easy and relaxing. If you don't see as many posts... that's because there's positive progress being made!

Thanks again!

- Jess (Abu Dhabi)

Saturday, May 1, 2010

Objective: Recovery!

Team Jess -

Just a quick update: Our girl is doing really well. She's been moved from ICU into her own room (room 4246). The only reason it took so long is there were no available beds.

She's doing really well and healing nicely after the 2nd procedure. Doctors think she may head to her temporary home (thanks again Laura!) Sunday or Monday - more likely Monday.

She's in great spirits, laughing it up with all the nurses who of course, she's already best friends with. Her room is great with a beautiful garden right outside her window. She's loving it.

She's always got a friendly face in the room with her so she's never bored or lonely. While she's still not quite ready for visitors, she's excited to hear that everyone is cheering her on.

Thanks again for the support!

- Jess (abu dhabi)
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