Monthly Archives

May 2010

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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…

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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.

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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…

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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…

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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…

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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.

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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…

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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.

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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…

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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…

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