Monthly Archives

October 2012

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Decade

Today I was able to see one of my best friends from my college days, my Pi Phi pledge sister Jen. It had been 10 years! It was fantastic, and crazy, and I’m so grateful that she was able to stop by and laugh and hug. My time with my girl friends (there were six of us that were very close – all from Texas) really shaped me from my late teens to early 20’s. It was so much fun catching up, I even actually got dressed in real clothes and put makeup on. I felt feminine. Womanly. Texas was such a life molding experience. I learned so much about myself, made some errors, evolved, and had a lot of fun. In fact, I keep threatening to take Dan to a TCU football game one of these years 🙂 I can barely wait to show him around Fort Worth. Gotta get him a pair of sweet boots! I can not believe it is my 10 year college reunion. Geez. Time just keeps flying by, but I don’t feel old. If anything I feel younger and younger and it’s not because my mother is bathing me. It’s a youthful energy that can not explain. I should get back to bed, I have been carefully editing my post for errors and it takes forever. My sleep patterns are still pretty horrendous, but it will all iron out in the end. When I’m really tired, I will just dip my head down to my chest and pass out. It’s kinda a sweet trick.

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Go For The Best

 Good Morning World. I’m giddy again 🙂 All I can think about is my wonderful life, I’ve been spiked with endorphins, I want to dance and celebrate and laugh – it;s so fun! Of coirse, I can’t get too crazy or I’ll hurt myself, no shaking the brain. I can not believe I did it, another brain surgery. SWEET! I even have some hair! I keep welling  up with hapy tears because I;m alive, it is just so thrilling. It’s hard to explain, but when you go in for a brain surgery, you walk into it knowing that you could die, it’s a risk you are willing to take. It’s not a “you could hit by a car” it’s literally step by step, into the hospital, needles, IVs, anasthsia talking, lights out. You don’t know what happens after that. Once you make it out you are still in dangerous water, there are a mirad of issues that come up, like my blood clot last time or the hemotoma. As the hours fall away, you start to watch and confidence grows, and when they finally release you from the hospial you get to emotionally jump for joy. You realize that you’re coming into the clear. It’s thrilling!! That you/’ve done it. Even when I was sobbing from pain i was ecstatic to be alive, i kept telling Dan that I can handke the pain, it means I’m here, I did it, I survived. It’s very hard to explain the way it is. To be nauseously sick, throwinng up in pain but happy is wildly confusing. My heart is just so happy. I am more appreciative after this surgery, even more grateful. I want to hug strangers, give away all of my posessions, help peopkle, thank people, get crazy and share how…

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Beautiful Bruises

Right Hand Left Hand Things are healing really well. It has been 11 days and my bruises are beautiful, in no time they will be a memory. I’m stikl waitimg for sensation on my right side, but that’s alright, I know it will come. I Often feel like my underwear or pants are falling dowm on the side right of my body or I drag my body across the wall walking scratching myself as I go, It’s pretty funny. Today, I walked three blocks, rest for 15 minites and walk slowly back home. As I returned home from my walk I noticed my right arm wilted, as my energy waned. I started swirving like a drunken deer, and then I needed to be bookended by my parents so that I wouldn’t fall over. Made it though 🙂 I contined home, walked in the dooor, fell onto the couch, tried to reach my water glass with my right hand (always pushhng to use the bad hand) and just after taking a big sip, I watched my hand hand reease the glass. Shattered it. I drop everything. During meals I drop my utensils, time, after, time, never stopping until I’m done eating. My rule is that if I want to eat I have to eat using my right hand. I have to earn it. half way throigh the day I have a hard tme picking up myh right arm, so i go takea nap. I will be fying home Frday with my parents. Fior niow I’m trying to rest, take small walks, be out and hear sounds, bright lights, for a few minutes eatch day . the travel day will be intense and exhausting. i can’t standfor long times, i hop[pe  i get better so i dont have to use a wheelcheair….

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Nightmare

Just woke before myidmight pills, just 15 minutes early. I was crying, screaming silently, trapped in a treatment facility trying to beat this tumor. The lights were out, it was dark. People with shots and venoms and poisons lurched at me, ignoring my pleas, unable to comprehend my language, my gibberish. I screed for Dan, for mom, no one could reach me. They could hear me but it was too dark, to hard to find me, I was strapped down. Dan flew home tonight, mom and dad are here to see me thru Friday until I can come home. I’m healing but I think there are deep fears lingering. I wish it wasn’t the case. I fitfully chase sleep, and I know I need the reprieve, but even with the best intentions and hope from this process, I cannot ignore the trama my body has endured. Ill try again, swollow more drugs, visualize fat faced kitties and furry puppies, and if all fails and nightmares prevail, I will try again because although terrifying, a good cry can heal.

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Great, Pretty Great, and New Plan

ok. Patho,ogy. Still low grade. YESSSSS! howevery, the tumor is not with9n the density poerameters, therefore i will not ne able to get the personalized vaccine. RATS! So, now we email Dr Laiu and see if we can have my tumor tissue and take it to Germany or somethimg ajnd pay for the dendritic cell therapy out of poctet. The clinical trial has litt.e rules and if we go to germany they can give me more vaccine and stuff. its compicated, somthimg ive been researtching for about 7 months. i was obviously hopinjg the clinical trial would get it done, but we have more options. i will not give up, there is no where i wont go, thravel, exhaust optiojs. just another bump in the road. we just found out last night and it was a lot to process, but like usualy, we sort it out, talk it out, and get back on track. didn’t sleep last two nights, about total of 4 houjrs. this jojurney is wild, just when you think ypu have a plan 9t changes 🙂 its practically hilarious, you just kee0 planning, keep learning, never stay stagnant, nevver give up, not be afraid taking chances. ASo at this point herman is TOAST. We know that the tumor always grows and there is seme invisable tumour, but we just restarted my clock! i hope it works to go to germany and do the dendritic cell therpy, focus on diet (only proven diet to combat brain cancer is ketogenic, or less severe is paliolithic – low carb, low sugar). If i keep my supplememts going, really target them so i dint get so exhsustive of so mapy pils, excercise and i will be GOLDEN! Dr Liau was very disappointed that i dint get the vaccine, but also happy…

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Oh mighty have fallen – poo saga contines

so frusted havnt been able to poop cover a week!!!!. Wish i didnt have to talk about -in but  that’s the big problem. every const0atioun pill, every max dose, prue juice, two kale smoothy, a day, powders, veggies, EVERYTHING; lots of water, my body so frustated. so gross. and pain. RATS. dan went to get more options. while i was in hospital the doctors said they were givng me [pain killers for doses for a 300 person. my complely warped. they could not believe how much pain i edure and toerate and not be knock out. iwould silent sob through the night, then nurse feel sobad, up my dosage. crazy! it makes sense that i need three thimes the dose. my mody is all out of wack. not sleep from paing in the stomack. just lay in bed all nigth waiting. cramps and cramps, unreal. sorry to tell you so much. hope its okay. if my bowels are my biggest problem its kind of funny, except it makes me sooooo cranky 🙂 SO CRANKY!! on anther side my right side is movi g more, its greatT! i am rigbht anded and trying to type with both hands, this is new! coo! my body is still weird, ican see mybody and arms andlegs, but i dont recagn9ce them. like a out body experiuence. like a third person, or i see dan but i see him but backwards. almosrt ipossible to explain. like im a sciece prject. totaly amazing! im working on randlm stuff, fun to prgress 🙂 wish i could tell everthing maybe in time! tigle in arm and leg ist great! even when its uncomfortable. i will do it! right after a nap. the constaption has me stumed though 🙂 so gross but ultimately the biggest thing in my problems….

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An extra 30 min

Pills are ever 3hr and I had a glorious nap! 1 1/2 hour. Naps are amazing. I don’t ever fight them at all. I love it. I get giddy. So here is a cool thing, Dr Liau spend an extra 30 min after surgery pulling my skull really tight so scar would be persice and clean. Don’t know if you know that my first Dr Sibergeld used staples and then had to open my brain again. It wasn’t as presion. Wide scar and dr Liau couldn’t leave it. I immediately notice how clean and dainty the scar and dr Liau meekly smiled, appreciated I noticed. She was the one who shaved me, so clean and gently. She cared about my brain, my scar, the woman had her dainty fingers in my brain. That is amazing. A gift. She puts things better than they were, that is a wonderful, a great to live life. I have so much gratitude! Hope tomorrow we will get final pathology. Always little nervoous, but t am truly happy! Thank you for all the love and encouragement. I am having so much just nap and vist with Dan. I am surprised take this long recover but no pressure hear 🙂 I cannot tell you how much I love you all!! Another fabulous day. The aminging things I’m able to do. So cool!! I sound simple but I’m thriving 🙂 sometime maybe simple the best

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Dream Dog

When Dan slep between pills I have fun laugh at cute things. This my favorite right now. It is so sick I almost throw up its so awesome! Hope enjoy. I sleep lots but sometime stomach huts. Always fogey when I see distractiod. Dan and I cute kitties and dogs and laugh for ever. Chek this out. I want it soooooo bad 😀 Sweet dreams!

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Jess Post

Have so much to say but still my miatitions. Lot of auto wrds is handy 🙂 Dan is so kind and patient. Mom and and dad and Kaal home for now. Mom dad back Sunday and dam go hope. Wish I could express explain thigs. I always have things to say 🙂 this will this is be tough I though! Only use left right hand, so tricky. Right foot weark and unsteady, lots of naps, but still begetter every happy. I know u must sund funny bit just a bung in a road! I’m so happy,I do this before and I do it again. Wish you could see hope hey me famy feed even wipe me. Embasr and I cry once. I very private with bath stuff, but of coure y had my period. When rain it pours! I fart start time first Dan. Cry and cry but oh we’ll 🙂 life oh on. My crazy life 🙂 try to tell a little little so you can imagine. Hope I didn’t say too much, to aphic. I’m surprising myself saying so much. Still happy though 🙂 because my family and dan so make so happy. They are amazing!! Sorry still rumbled but great to challenge 🙂 still can’t believe toot. Bamn. Honeymoon over ….

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Address

People have been asking for the address to get things to Jess. Although she wanted to make sure everybody knew she didn’t need anything and that nice comments were enough, here it is. Globe Homes and Condos INC1231 Electric AveVenice CA 90291 This is the property management office, and they bring us anything that comes, so make sure you have Jess’s name somewhere on there.

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