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.

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 i feel. I haveto takeit easy though, dont want to cause an overload like a seizure.

I dint mind if i have deficits, i don't mind if im more "simple" i don;t mind if i look like a cavewoman, i dont mind the lack of sensation or physioca.l deficits, i am just HAPPY. this is just such a gift. To be happy. I remember never being happy, never content before the tumor. Never satisfied, always needing to do more, accompk\lish more, i was never happy w9ith myh looks, silently barrading myself, being my own mean girl. What's the point in that? What a B. I am so grateful that I have walked away frim that place, that I assess myself on a deeper level. I have always been vain, always wanting to be prtty and thin, and I still care, but more I carea bout being a good friend. I don;t know why im rampling, iguess its because im just so happy. By me not focusing on my outsdie as mucy, people are loving me deeply, just for who i am. it is the most amazing gift anyone could give and it makes my life so beautufil.

I still dont know what my role is on this Earth, but I am sure as hell having a blast enjoying the ride :) This tumor thing isn;t that bad. I continue to learnso much,  make amazing friends, meet brillant doctors, explore cuttng edge research, and go amazing places, all in the name of survival. Oh shoot, gotta go to NYC to check out a Dr. Dang it, I;ve got to head to LA and meet with a surgeon. Seriously, it'sawesoe. I am so gratefl f9r the fundraising, thatnk you for helping me. thyank you for encouraging me to go for the best care, to just do it, not give up, shelll the money and reward myself with the ultimate healthcare. it can feel gluttonous to consider Germany, but then i think, dom't be foolish little girl, pay the money, get the treatment, the whole point of this journey is to to heal and survive :)

You guys, we are on the right track, and we have everything goijng for us. Life is exciting!!

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. I woild be nice to be wheeled and keep my eyes closed too thoigh. We'll see how it goes.

I'm glad I have so much time to recouperate down here. Dan is already back at work doing 6 days a week 10 hour days. He's really busy and i still need help. My mom is bathing my head, I sit in the bath and laugh, compare myself to my three year old neice. I;m glad I have such a close family where i can count on my mom to bathe me, my dad has fed me, and Dan does everythinng between. If I hadn;t gone through this before i dont think i would have handl.ed it this well. im more confident in how i will progress, that this is just phase.

Im still bummed about the lack of personalized vaccine, but if ii have to get to germany, that;s what ill do. I have acceess to my tumor and Dr Liau is still going to be my doctor. YAY! She will follow me. We;re on the right path.

Ok. So pooped. I've bitten my mouth 20 times becauseje ha;f my face feels novicaned. My body is confused and the ony thing to do is tryh and rest. pushing it has never been a good idea. Sorry im so bad abount posting. just so hard to communicated sometmes.

 

 

Daddy Manicure

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.

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 that my tumor is not worse :) we want the lowest grade, least density, least invasive, and things as\re looking SWEEEEET!! We have so many things to be happy for, im so incredibly grateful!!! i do wish we were getting the vaccine, it was the icing on the cake, but no deal worry about it, its done. on to the next. things always cange, cant really hope for definite thiings you dont really know what;s best. does that make sense? back to our never ending battle. i was pretty tired last nignt, a litt;e down becaise the clinical trail wasnlt happened for me. i just wanted thing to be easier. but know im giong to take this advantage to explore germanys clinics, the wor,d, review again all the cool treaments, and accept that my path is in credible and very fortunate. this journey keeps giving more froends, new surprises, amazing opprotunities. no complaints, seriously! thank you again for all of the love and friends. i am so much better than if ihad never had this challenge. youi guys make me a better person.

Serious Cavewoman! Look out

ps not to brag or anything, but i can hold a glass and drink from my right hand!!! not always, and a few mistakes, but seriously, killing it, and using a fork. definitley NOT laduy like, kinda like ogre or cavewoman, hilarious, but exciting! when recovering there is no point too proud - just celebrate.

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. ps i speak way better than i type. that makes me very hapy that people understand me speak9ng. sweet!!

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

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 :D

Sweet dreams!

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 ....

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 INC
1231 Electric Ave
Venice 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.

Feet In The Sand.

We had another successful night of keeping Jess's pain to a minimum. She's getting good sleep, even if its only in three hour segments. Today Jess went on her first walk outside of the hospital. She was determined to get to the beach and get her feet in the sand. The beach is roughly one half block away but I've seen Jess run 10K's with more ease. It definitely wore her out but she was very excited to accomplish it. Unlike the hospital, the sidewalk and sand required much more concentration and dexterity. She was napping within 20 minutes of getting back. It is a delicate line between beneficial rehabilitation and overworking to the point of detriment. Having gone through a similar, if not more severe, situation with the first surgery we have a better understanding of the saying "it just takes time". We now understand that some of Jess's deficits will return on there own time frame and that we do not have much control over them. Things that came back quickly last time may be the last to come back this time. Everything seems to be coming back at an expected rate, and for the most part we are very excited about Jess's recovery. She still has lingering cognitive issues with word finding, spelling and reading. As well as some physical issues regarding her right arm, right leg, and general coordination. With that said, all these issues are steadily improving, and I truly believe they will come back to the same level they were prior to surgery. Dr. Liau actually said Jess's right arm had more response after the resection, and that it may improve over pre-surgical form. Thanks again for all the support you all have provided, even such things as friends picking up Jess's parents at the airport. All of this support adds up to make Jess's situation as easy as possible. Thanks again.

New Home

I'm sorry that last nights blog didn't get published till this morning. I tried to blame it on the blog, but I'm now convinced it was user error. Of course shortly after I finished that post yesterday everything changed. Around 6:00pm last night we were asked if we wanted to go home or stay another night. This caught us by surprise because we were under the impression that we would be at the hospital throughout the evening. We all agreed that it would be better to get Jess to a place where her medication will be administered with the punctuality necessary to maintain the desired level of pain tolerance. With a ratio of 3 nurses (Bob, Bonnie, and myself) to one patient (Jess), as compared to UCLA with a ratio of 1 nurse to 5+ patients, we knew Jess would get her medication on time and consistently. We are in our rental home now and Jess is doing extremely well. Her pain has gone up and down but not anywhere close to what was happening at the hospital. I was forced to relinquish my nursing duties, and although I tried to convince everyone I wasn't tired, apparently I snored throughout my entire shift off. I'm only mentioning this to beat Jess to the punch, as i'm sure she was going to tell on me later, and with utter delight.

She is doing much much better than at the hospital now. This place is much more peaceful and relaxing then the hospital, and she is thriving from it. Walking to and from the bathroom unassisted, eating real meals, teasing her father, and generally being a happy person. Every half hour or so she wants me to continually check and see if there are new comments from the blog. They bring a smile to her face every time. I truly can't thank everyone enough.

Jess try

It 2:19 morn. Can't write. Read no. This hard. Long road but I do better. So try. So try. Pills every three hour for pain, seizure, steroids, this long stuff. Long long road. Sad. I'm alive and that more that I hope more I hopeote.

Update V (didn't publish last night)

We are still at the hospital, and most likely will be going home tomorrow. Yes we have heard this before but we feel like we're really close to getting the pain management figured out. It's frustrating because it was a solution that had been agreed on by a Dr and us some time ago, but was somehow lost in the shuffle of doctors and nurses or stopped by hospital politics. Things went very well throughout the night and Jess's pain was kept In check. Unfortunately early this morning the medications Jess is currently taking all tapered off within 35-40 minutes of each other, and although she took her next round of dosing, her pain had come back too severely for the medication to help. This is one of the main issues facing Jess. The medication's effectiveness is greatly reduced if it is administered while Jess is in a high amount of pain. On the other side, if the meds are administered while Jess is relatively comfortable they make her feel much better and last much longer. There was slight adjustments made to Jess's dosing schedule that we are all very optimistic about. Hopefully this new regiment will be successful throughout the night and she can be released in the morning. She is comfortable right now and as long as we stay on top of the schedule I believe she will remain comfortable throughout the night.

*Special Note From Jess*
Jess wanted me to make sure everyone knows she is having trouble with her words and typing coordination, which is not allowing her to respond to people in person. I will do my best to channel Jess's voice and respond to people, but please forgive my tardiness. Thanks again for all your support.

Update IV

We are still at UCLA and Jess is currently doing very well. Previously there had been talk of her being released this morning, but we are still attempting to gain control of her pain medication. The main issue is that Jess's pain management is dependent upon a drug that is administered through an I.V. In order for Jess to be released she needs to be on a pain management regiment that can be administered in pill form, thus allowing us to administer her medication at home. We attempted to reduce her I.V. medication last night, and ended up in an whirlwind of pain and frustration. I will allow Jess to revisit the ordeal in detail once she regains control of the blog. To sum it up, protests were made, higher ups were talked to and a nurse was barred from entering our room. It was very disappointing and frustrating for Jess's family and I, and extremely painful for Jess. We are now taking a different, more gentle, approach to the reduction/changing of her pain medication. Once we have a successful regiment to control Jess's pain we will be allowed to leave the hospital.

At this point I would like to send out a special thank you to Tia. She is a close family friend to the Oldwyn family and helped guide us through a tough situation last night. You saved Jess a tremendous amount of pain, and for that we will always be appreciative. Thank you.

*Special note from Jess*
Due to my ineffective blogging, I failed to mention that Jess received a "total and complete resection". She wanted to make sure everybody knew that.

Jess Update III

Jess has been moved out of the ICU and into her own room. The move was tough as we had to adjust to new nurses and new routines. She still has an significant amount of pain to deal with, but we managed it well enough for her to get some sleep last night. She says she got about five hours, but I would predict three, maybe four tops. She is having trouble with the dexterity and coordination of her right hand. It is a similar condition to what she dealt with after the first surgery. It is not as significant of an limitation but still something that requires a tremendous amount of attention. She can communicate and read effectively, but has found a problem with writing. She has difficulty identifying the correct letters to create the words she is searching for. We have every confidence these issues will subside in correlation with the swelling surrounding her brain. The deficits are serious and extremely scary, but at the same time they are much less intimidating then the deficits she faced after the first surgery.

Last night, or maybe early this morning, Jess fell asleep reading emails and text messages from the vast amount of people supporting her. The support she gets is a continual inspiration and source of happiness for her. I cannot thank all of you enough.

Happiest Girl

First 24 hours

We just made it through the first twenty-four hours since the brain surgery. During this time post-op patients are at their greatest threat for regression and complications. We are still in the ICU but got word from our nurse that we may be moving out within the day, we will see. Jess is still dealing with a tremendous amount of trauma, but is doing quite well in my opinion. This opinion is also backed by Bob, Bonnie and Kaal. We all feel that Jess is doing far and away better then she was at this time after the first surgery. Besides being groggy, and wearing a large hat made of gauze, you would not guess she is so shortly removed from brain surgery. We are happy about her condition and continually amazed by her spirit. I have read her a few of the text messages and blog responses when she is feeling down and they lift her up immensely. Jess is deeply touched by all the love and support everyone has been sending her way. We can't thank you enough.

In the ICU

I'm finally with Jess in the ICU. Besides trying to get the scheduling/dose/type of pain medication down, things are going smoothly. In between spoonfuls of ice chips Jess wanted me to tell everyone "hello from the ICU". We are going to be able to meet with Dr. Liau tomorrow for more details and evaluations. I will post another blog then.

Post-Op Jess

I was just able to see Jess for the first time. It was real quick as I was only needed to sign a consent form for a post operation MRI. The MRI is standard, and it seemed like everything else had gone well up to this point. She should be in the ICU by 6:30ish now, which is much later then first thought. It really doesn't matter as long as Jess is ok. She was doing relatively good, considering the circumstances, and was able to smile while briefly communicating with the nurses and I. There is no telling where she will be when the meds wear off or the swelling ensues, but at this moment she seems to be doing pretty good.

Thank you for all of your support. Jess will be very grateful to have received so many positive messages.

Post-Op Jess

I was just able to see Jess for the first time. It was real quick as I was only needed to sign a consent form for a post operation MRI. The MRI is standard, and it seemed like everything else had gone well up to this point. She should be in the ICU by 6:30ish now, which is much later then first thought. It really doesn't matter as long as Jess is ok. She was doing relatively good, considering the circumstances, and was able to smile while briefly communicating with the nurses and I. There is no telling where she will be when the meds wear off or the swelling ensues, but at this moment she seems to be doing pretty good.

Thank you for all of your support. Jess will be very grateful to have received so many positive messages.

Jess update II

Just spoke with Dr. Liau and Jess is finished with her resection and is currently being closed up. Everything went well and she is going into the recovery room for roughly an hour then transferred to the ICU. Once she is moved to the ICU we will be able to see her.

Update on Jess

Jess wanted me to thank everyone for all the love and support she has received throughout her entire ordeal and especially during the past few days.

Right now Jess is roughly one hour into her surgery. As always, she enjoyed her nurses, anesthesiologists and doctors immensely. As always, they enjoyed her just as much. The entire process from sedation to admission to ICU is suppose to take roughly 7 hours. That means we will be seeing Jess again at roughly 2:30 or 3:00. I will update the blog again soon thereafter.

Thank you,
Dan

Final Note Before Surgery

I check into UCLA's Ronald Regan hospital at 4:45 am. I am the first brain surgery of the day for Dr Linda Liau. I keep calling it my brain tumor nap :) I'm so grateful that I get to sleep through it. I am nervous, still apprehensive about things, which I believe is completely normal. They are going to shave off a running strip across my head from front to back. It should be about three inches wide (imagine a reverse Mohawk). I have really enjoyed my hair, and I am too attached to shave it this time. Instead, since Dr Liau said that I wouldn't have to shave it all, I decided I will try to work around it. My girl friend Meghan cut her hair today (it's her 30th birthday) and is gifting it to me so that a gentleman in Bellevue can create a wig for me (he can do a full wig or a partial). Seriously, you heard me right, Meghan cut her hair, 10 inches to create a wig for me on HER birthday. Wow. That's Meghan for you, always doing things for other people. THANK YOU MEGHAN!!!!!! More details about that amazing situation to come. Also, my childhood buddy Marina came over for breakfast this morning and she started cluing me in on all the amazing things that fake hair can do. Originally, I was just going to use the hair on the sides and back of my head and put it into a ponytail and wear baseball caps for the next several months. Now, it looks like I will have lots of options :) That makes me really happy!

Anyway, I'm absolutely exhausted. Dan arrived last night, and my brother arrived this afternoon. While my parents were driving to get Kaal, Dan and I went to the beach and swam. There has been an incredible heatwave. The temps are in the 90's - scorching. While we were at the beach we were able to watch the dolphins play in the waves. They were having so much fun! They're so playful and sweet, it was amazing. We watched for about a half hour, then decided to join them. I was hoping to inch my way closer and closer but I think I scared them away. They did a final swim through the wave, you could see them as the wave grew and they were gliding with it, when the wave broke they jumped into the air to avoid the froth. It was mesmerizing.

For this surgery they made me remove my toenail polish. Weird.

I'm rambling because I'm so tired. I haven't packed quite yet (we will be moving locations while I'm in the hospital) and I need to wash and blow dry my hair. My plan is to straighten my hair and then pin it back on either side of the current scar exposing it as clearly as possible. Hopefully, once they see how wide my current scar is, they will decide that they don't need to shave much :) You never know.

As for tomorrow, Dan said he will keep the blog updated. I truly hope that everything goes well. Most of all I hope that I don't die. I don't know what is in store for me, what my purpose is on this Earth, but I'm truly excited to find out. I'm hoping that this isn't the end of my story. I hope that I can continue to learn, evolve, fight to get healthy, hug friends, jog in the misty Seattle air, cuddle my kitty, and maybe, hopefully, someday, share my love with Dan by having children. There are so many things that I'm hopeful for. I am very aware that my life is a gift, that each moment is all that I have until the next. All I can do is hope for more, more time, more opportunity to love, more time to laugh and hug and smile and breathe and appreciate the things in this world.

Thank you for the love, for the support, and for the prayers. It would be impossible for me to be faring this well without all of you - Dan, my family, my friends, the blog readers, the friends of friends, the people who stumbled upon the blog. Thank you. I have so much gratitude and love to all of you. I hope to be writing again soon, but until then, even though I don't even know who all of you are, thank you.

All of my love,
Jess

Best Case Scenario :)

Well my friends, you have done some serious praying!!! We have fantastic news!! Thank you for working so hard to pray on my behalf, for all of the love, and positive energy sent our way. I'm going to give you the run down from our appointment with Dr Liau and her assistant Emma who runs the clinical trial.

1. The second possible tumor is in the pineal area. They do not believe that it is tumor, although they will continue to track it and have me do Dopa PET scans at a regular 6 month intervals to monitor the situation. They have seen a similar situation in several other tumor patients and they wonder if it's due to excess stress, or irregular sleep patters. The pineal gland regulates circadian rhythms. Does not look like a second brain tumor!!!

2. After reviewing the fMRI with Liau, it is clear that my speech area is not near the tumor. The tumor, instead has grown into my motor skills, and sensory area. Fortunately, you do not need to be awake for the testing of the motor skill or sensory area. During a regular brain surgery, they can poke certain nerves, or stimulate different brain tissue to check and see if they're dealing with brain tissue or tumor tissue. They can do all the testing they need while I'm fast asleep. No need for a partially awake surgery - just a regular one!!!

3. The regular MRI shows that my tumor is still not taking up the gadolinium dye (which would signify that Herman had progressed to a stage III or IIII), which would mean that I'm still at stage II. This is just a preliminary prognosis, they will know for sure when they get the pathology back after the brain surgery. Sometimes a stage III isn't taking up the dye, even though it has progressed - so no guarantee, but it's a good sign. Looking good for a stable stage II infiltrating astrocytoma!!!

4. I will be the first brain surgery of the day, this Thursday the 18th of October. The procedure should take about 4.5 hours. If all goes well, I should be released from Ronald Regan Hospital sometime Sunday.

5. After I'm released from the hospital I will come back for a suture (staples) removal. Then an appointment to get the pathology of the tumor. Unless there is some unforeseen event, I should be flying home on November 2nd in the evening.

6. Dr Liau believes that this surgery will improve my quality of life. She believes that removing the tumor will allow my body to continue to gain back the language skills that were damaged after the first surgery. They reviewed the results from the cognitive testing from last Friday and they do see deficits, but they believe that with time after this surgery I will continue to improve.

7. If there are complications from this surgery they are anticipating that they would include the inability to feel things on the right side of my body, or difficulty with moving the right side of my body. If that is the case, Dr Liau believes that with dedicated physical therapy I will be able to completely regain any lack of sensation or mobility. She feels confident and (in my opinion) excited for the tumor resection, believing fully that this is going to be a huge improvement in my life and in my future. She is the most humble doctor I've ever met, with a healthy amount excitement and immense curiosity. I wish you all could have been in the appointment. I have complete confidence in her. In fact, I wish we could hang out, I'd love to be friends and hear all about her research and views on life. The woman is interesting in so many ways.

8. If all goes well, I will fly back down 3-4 weeks after the surgery for them to harvest my white blood cells. I will then fly home and come back down to UCLA one week later for my first shot. There is a chance that there will not be enough tumor tissue to give me a personalized vaccine. There are a few other factors where they have to analyze the tumor proteins to make sure that it will work for the vaccine. There are a lot of factors that we will not know about until they have the tissue in their hands and can run a battery of tests. Fingers crossed that I'll be able to get the vaccine. If not, at least they will have the tumor tissue out of my brain. Adios Hermie!!

Here's a photo of mom, dad, and I after the appointment. Mom wanted to celebrate the great news with a group photo :)

 Here's another photo that my mom took as they were about to send me into the fMRI machine yesterday. That was a crazy experience. I was absolutely exhausted after that. Completely spent. I'll tell about it another time.

Destiny Calls

We're headed out the door in a minute to find out if I have a second tumor. If it exists, we should find out it is malignant. We should also find out if Herman is taking in contrast dye which would signify a morph into a stage 3 or 4. We will also find out if I will be able to remain in the clinical trial if I have a second tumor, and if I am able to do the surgery, whether or not I will have a partially awake craniotomy or a regular one. I am bracing myself for all of the information. I wish Dan could be here, but he's working. He'll be flying in tonight and I can't wait. We have so much to discuss, and a lot of hugs to make up for. I have a feeling I'm going to be a monkey crawling all over him at the airport, and for the rest of his time here. Hugging Danny is like charging my battery. I'm hoping for good news this morning....either way I'll keep you posted :) Love to everyone, and thank you for all of the support. Your comments on the blog and Facebook make me feel so good. I really appreciate it!

Zombie

There's a little moth munching in his little garden on our deck

The testing on Friday was no big deal. Instead of doing an entire battery, they pinpointed their biggest concerns and specifically chose several tasks to measure my abilities that have been effected by the tumor. The majority of time spent Friday was actually an interview. The specialists are concerned with the effects after the first brain surgery and how I've been recovering/functioning until this point. Their whole goal is to assess whether or not Dr Linda Liau should perform a partially awake craniotomy or a regular brain surgery. At this point, they are leaning toward another partially awake brain surgery. Damn. Not what I was hoping for. Apparently my tumor is so incredibly near or already integrated into my speech and language processing area that they're afraid if they do a regular surgery too much of my healthy tissue will be removed causing serious defects. They won't make their final decision until they get the results from my regular and functional MRIs on Monday evening. I will find out their decision on Tuesday morning at 8:00 am when I meet with Dr. Liau.

My first partially awake craniotomy back in April of 2010 was exciting. It was crazy to think that they were going to wake me back up after sawing open my skull, that my brain would be exposed and that they would place electrodes around my brain to make sure that they tried to specifically only remove tumor not healthy tissue. It was fascinating. It was the first time I had ever had a surgery. It was my first stay in the hospital. I hadn't even had a cavity before. Everything was new, and exciting, and I saw the surgery as a necessity, not an option.

During the long interview on Friday, after getting the pertinent information of my current "disabilities" I believe was the word the woman used, they were very interested in the attack that happened back in July. I kept telling them that I've come a very long way and that my "disabilities" are, in my opinion, minute, but they're scientists so they like to be precise. They're not so interested in improvement at this point, their whole goal is to make sure that the areas that are in jeopardy will not be compromised. They want my brain preserved in its' best, most healthy, natural state. After that, I explained the deal with the attack and the current resolution, including the details of the criminal investigation, my involvement with the prosecutor's office, my counseling sessions, and then I continued on to explain the panic attacks that have occurred. The panic attacks are a serious concern because people have very odd experiences when they come out of the anesthesia during the surgery. Your brain is exposed, and your body is very confused, you're confused, and it can cause severe panic. Now, although I do not want to do a partially awake craniotomy, if the doctors and specialists believe that it's necessary to be awake again, I will do it. I just hope that I don't freak out during the surgery. The specialists said that if I do end up freaking out when they wake me up from the anesthesia, they will use some code phrases that we come up with together, and if that still doesn't calm me down they will just put me back under and they will cut what they need to cut. Both options sound horrible, but it's definitely in my best interest to remain calm and undergo the partially awake craniotomy to preserve as much healthy tissue as possible.

I'm so stressed about everything, the possible second malignant tumor, the possibility of another awake craniotomy, the possible issue of blood clots or other complications and the vivid memory of the pain that comes hand in hand with a brain surgery, that I can't seem to sleep. In the past three nights I've had a cumulative amount of 18-19 hours of fitful sleep and no naps. I truly can not describe how excited I am to have Danny arrive Tuesday night. We always seem to diffuse any difficult situation by finding the laughter in life. He's the most amazing man in the world. In fact, I told him that if I have to do another partially awake craniotomy, and that if I freak out and they can't calm me down, that they will just put me back under and just remove the tumor, his response - immediately - was, "Ask Dr. Liau and the specialist in Tuesday's appointment if they can scrub me in. I'm always able to put you at ease." My heart literally melted and I asked him if he could handle seeing my exposed brain, and he said gently, "I could do anything if it meant helping you." Wow. I can not believe how lucky I am. He is the strongest man I know, emotionally, physically, spiritually...in every way. I can't imagine going through this without him. I think it's harder on him than it is on me. Of course, he doesn't show it, just another way he protects me. I can't imagine if I was in his shoes. Horrible. He is amazing.

2nd Malignancy?

What if the second area is malignant. Will that revoke my acceptance into the clinical trial?

Wow. Lots to think about in these coming days. Tomorrow, I have up to 6-8 hours of testing, all cognitive stuff. It's like back to back to back SATS.

As I digested my new information, my dad called me upstairs to check out a stunning rainbow. Does that signify that everything will be alright?

2nd Tumor Resection Is On

Bad news. The report showed that the tumor has grown. It used to be 10 mm x 16 mm x 9 mm and now it is 1.2 cm x 2 cm x 2 cm. Bummer. Apparently, all of my insane supplements have not done what I was hoping. Also, I have not been as diligent about my diet as in previous times so I'm sure that played a part. The only true diet to starve a tumor is the ketogenic diet which is incredibly hard to follow. If you remember back maybe a year or so ago I tried it, but it was so limiting that I couldn't keep it up. I was miserable. Anyway, now the tumor has grown, and unfortunately there is a second area of concern. Another area of dopa uptake. They will know for sure if it is malignant after Monday's two MRIs.

Wow. Bummer. Huge bummer. I guess I'm going under the knife again. I'm scared because now that my tumor has doubled in size they have to cut out more of my brain. Also, the area that grew was toward my speech center which may imply the necessity of an awake craniotomy which as you know raises serious concerns for complications. Damn. The doctors should know by the end of the day Monday, perhaps Tuesday, the type of surgery necessary to preserve the most brain tissue. The most shocking blow, beyond the growth is the possible second tumor. A calcification that took up the radioactive dopamine. If it's malignant I honestly do not know what I will do. What I will think. How I will handle it. Jeez. I honestly didn't see that one coming.

Ugh. I'm sick to my stomach. I wish UCLA was in Seattle so I could be in Danny's arms. He should be here a day and a half before the surgery. Until then I'm going to have to be strong.

Still Waiting

Good morning. Unfortunately, I only got 7 hours of sleep. This isn't going to bode well for my lingering cold, but I'm all amped up. Even as I write it I know I sound like a brat. Lots of people would love to get 7 hours of sleep, and here I am complaining. Sorry. Just ignore that :)

Thoughts keep running through my brain, I even imagine the synapses firing as I think. I'm highly tuned up. On my disk of the Dopa PET scan there are several images, and series of images. On the Dopa PET scan UNCORR it shows a bright white area which is not exactly located in the tumor area, but near. That's terrifying. Is it a new tumor area? On the Dopa CT the whole brain is black and grey and I can see the tumor resection area but I can't definitively see Herman. Herman, according to some Google research, should show as black, unfortunately, the tumor resection area is black as well. I'm sure the technicians have special tools to analyze my brain, but on our laptop we're just laymen trying to make sense of some advanced technology. One of the images on the disk is a side view showing either a plate in my brain spanning the entire left side of my skull or perhaps the synthetic dura mater, and the five screws that are attaching my skull together. If that's not nauseating I don't know what is. One of the screws which is located at my left temple makes a lot of sense, it's an area that has pain sometimes and is still raised, and always tender. Of course, I'm just mumbling. A raised area or a little tenderness is nothing compared to another brain surgery.

This morning, I woke up and grabbed a glass of water. When I went to get back in bed I racked my skull on the headboard. It hurt, but all I could think of is that I'm going to need to be much more careful because if I get the brain surgery, bonking my head will be astronomically worse. I'm so grateful that I've been able to go 2.5 years without another brain surgery.

I'm nervous for the report from the Dopa PET, and anxious, but at the same time it's wonderful to be floating in limbo. In this moment, I still have the possibility of no discernible tumor. Without the definitive answer, I still have hope, still the possibility of a miracle, of having been healed. I'm a very lucky to girl to have so much support. I've had help working on my supplements, figuring out new things to attack gliomas, I've had prayers from people from my hometown, my country, the world. I have had the support of friends, acquaintances, strangers, even the lady at Seattle City Light who asked why I was headed out of town - I gave her a brief synopsis and she said, "Oh sweetie, you just remember that Lynn said you're going to be just fine. I can just feel it." We laughed for a little bit and I thanked her. I get support from literally every avenue of my life, and I appreciate it SO MUCH.

On another note, I was talking to my dad about the independent review of my MRI's (I wrote about it a few posts back), and I need to clear up a couple of mistakes. Apparently, the gentleman who reviewed all of my MRI's did know my type of tumor, and he didn't say that the tumor was exactly the same he said something like, "There is no clearly discernible change in growth." Anyway, I just want to report things accurately. It doesn't change the message from my post, or the meat of the issue. It still looks very odd that UW was pushing me to do radiation. So much so that they were calling me at home to clarify any questions that I might have, or fears. They wanted me to come in and get a face mask fitted so that I could see that it isn't that scary to do radiation. I felt like they were trying to get me in with any trick up their sleeve. Crazy. Why would they still be pushing me when the tumor was stable? Why not wait?

Anyway, no need to beat a dead horse. Thank you again for all of the continued support, I truly appreciate it very, very much. Fingers crossed for a miracle, or as my dad likes to say, "It wouldn't necessarily be a complete miracle, you've worked very hard, so it would be a mix of both." I'll take that compliment :)

Waiting

We're still waiting for a final green light that we're headed toward brain surgery. I'm still, deep in my heart, hoping for a complete miracle. That perhaps I'm reading the scan incorrectly and the area of the tumor that we're looking at is some sort of unexplainable abnormality but not tumor. Until I hear from Dr Liau that it's for sure tumor, I'm just going to keep calm, continue to heal from my cold and enjoy each moment. Both nights, Dad and I have gone for walks along the beach. It's just the two of us for now, mom's back in Wenatchee working and Dan's back in Seattle working as well. So it's a father daughter team holding down the fort. Waiting, waiting, waiting.....laughing, debating. I'm trying to convince my father to share a few of my more socially liberal views. It's not really working, but he respects me for trying :)

I promise to let you all know as soon as I get the results. I asked the receptionist at the Dopa PET scan check-in if I could get the results sent to me. She gave me a form and I should have the read-out in my email either tomorrow or Friday. I'm always looking for the answers as soon as possible, even if it isn't want I'm wanting to hear. We will hit this head on, no pun intended :) for now we're on pins and needles.

First UCLA Appointments

I am exhausted. I was increasingly sick until I woke from my nap yesterday. The travel day was horrible, but who cares, I'm getting better and better!

Today I had my Dopa PET scan. Unfortunately, we blew out my vein on the first try so some of the radioactive liquid started burning horribly. The gentleman stopped and had to run back to the back room, the radioactive stuff can't be left out or it goes bad, so he had to switch it out, hurry back, poke my other arm, inject the new radioactive stuff and we were good to go. After the injection they had me lay down for 10 minutes while the dye moved through my body. Once in the scan, unfortunately, I had three coughing fits. It was uncontrollable, there was absolutely nothing I could do. Typically a cough will ruin the scan, but after reviewing the slides they said it was fine, which was FANTASTIC. I did not want to have to do another round of radioactive dye, or scan.

After the Dopa PET I had to literally run to another building because I was late for my pre-op physical. Every doctor, every technician, each receptionist and nurse - they were all incredibly kind, fun to be around, and they made my stressful, action packed day, as nice as it could be. The doctor checked me off and I'm good to go for a brain surgery. My general physician actually does rounds in the neurosurgery ICU on Fridays and he was excited to be able to check on me after my surgery he said with a sweet smile, "I will be doing rounds, and I'll come check on you. Of course, that is, IF you end up having to do the surgery." He knew that we were waiting on the Dopa PET scan results.

After the physical I went down several floors to the lab to get blood work done, the third needle of the day....rats. A little pee in a cup and I was off to another building for a lung x-ray - a formality. After that Dad and I went down to the film department to get copies of my Dopa PET. Within 20 minutes we had three copies of my scan. We have already reviewed it, and although we really don't know what we're doing, it's nice to see what the doctors are looking at.

There are several different scans of my brain, one does not light up ANYWHERE. There is another one that does, right in Hermie's house. I'm not going to make any snap judgements, but it looks like there is active tumor. At this point we are expecting to go through with the brain surgery. Bummer. We'll wait for an official nod from Dr Liau, but I'm mentally preparing myself for the knife.

Tomorrow Dad and I have to run to the hospital to get more medical records, and contact UW to send more medical records to UCLA. The details are never ending, you have to be on top of your game. You have to schedule so much of your own appointments, and you have to get all of the medical records, this is a very interactive situation. I wish I could just show up to appointments and have it all figured out, but oh well.

Off to bed.

If you look closely at the pen you can see a person laying on a bed, and when you turn the pen, the bed floats into the machine. Just a little gift from the Dopa PET scan department. A parting gift for subjecting yourself to radioactive fluid? :)

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.

I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

The 1%

Last night I was thinking that I'm in the 1%. Not the 1% financially. Not necessarily the 1% of survival rates for brain cancer (it's what I want but not my point). I'm 1% of the 7 billion, the luckiest percent in the world. I feel like I have one of the best lives. An amazing husband, great family, wonderful friends, amazing support, a warm comfy bed, clean delicious water filtered or not from the faucet, a wide variety of healthy foods at my fingertips, a safe home, a friendly community, gorgeous Seattle weather with no real annual natural disasters, free speech, the right to vote....I mean, really, I've got it made. Here I am with medical care, terrified of a possibly life saving treatment and I've been missing the whole point. People die from trivial ailments, and I'm getting the most advanced therapy in the United States for brain cancer. I'm lucky in life. I am the 1%. And this 1% has a temperature of 101. I'm going back to bed. But I'm going back to bed with a smile :) and some serious gratitude. I think my warrior is getting her game face on.

Beautiful Scars

Yesterday evening I went for a walk around the lake, of course, the second my feet hit the gravel along the outer loop my footsteps quickened. I'm a wonderful walker with friends, but alone I need more speed. I ran around the lake, sprinting at times, purging my emotions. It felt therapeutic. It felt cleansing.

I'm embarrassed by my last post. I have a wonderful life, and I truly have nothing to complain about. My troubles are not more important than everyone else's. In fact, if there's about 7 billion people on earth I can confidently say that there are hundreds of millions of people - possibly even billions - with problems much more serious than mine.
 
I just finished reading an amazing book titled, Little Bee by Chris Cleave. There are several powerful quotes and I want to share them.

“We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.” 

“If I could not smile, I think my situation would be even more serious.” 

“I was carrying two cargoes. Yes, one of them was horror, but the other one was hope.”

“They say that in the hour before an earthquake the clouds hang leaden in the sky, the winds slows to a hot breath, and the birds fall quiet in the trees of the town square. Yes but these are the same portents that precede lunchtime, frankly.” 

“At some point you just have to turn around and face your life head on.”

“People wonder how they are ever going to change their lives, but really it is frighteningly easy.” 

“We cannot choose where to start and stop. Our stories are the tellers of us.”

My Inner Coward

My favorite photo of Chicago. Matt and my gummy bear race in his, Miriam and Nate's room. It's fun to laugh with friends that we've known since we were little. Matt & Nate lived next door since the time I was in middle school. I remember, from time to time - when I was lucky - getting rides home from school from the neighbor boys, saving me from the one mile walk along the dirt road. The Wight brothers. They were always down for a little basketball at their place, or mine, you would hear a ball bouncing and it was on. I have so many amazing memories in Friday Harbor. Sometimes I wish I could go back in time and relive it all over again. Back to a time when my biggest concern was earning my driver's license.

I'm writing another post because I can't sleep. I feel like I have adrenaline bursting through my veins and nausea, along with dread, fear, and some sadness. I am one of those girls that is walking with the weight of the world on her shoulders. One of my favorite TV shows is called Parenthood. Dan can't stand it because it seems too realistic, but for me that's exactly what draws me in. One of my favorite things in life is watching human dynamics, and relationships, ebb and evolve. I'm in a vulnerable place right now, inching toward the knife, again attending appointment after appointment, MRI after MRI, reality into reality, deeper I go. In my show one of the characters has been diagnosed with breast cancer and the storyline stirs up so many emotions. It makes me confused, and reminds me of so many things. I find myself watching with tears running down my face. It feels cathartic and yet masochistic.

I am terrified of undergoing another brain surgery. I am scared for my head, all my little happily rebellious hair follicles, the scalp, the skin, the scar, the skull, the dura mater, the meninges, my brain tissue, oh wow, my poor body. Last time I went under the knife it was not an option. This time, I worry that I might regret walking into this. It could cure me but it could also kill me. That is a heavy burden and it's mine to bear. There are craniotomies performed all the time, hundreds perhaps thousands, I'm sure, most days of the week all over the country. I love hearing success stories, but unfortunately, I hear mostly those of horror. And with my history of complications, I feel as if I have plenty of reason to be concerned. I feel as if I am in my weakest point, that my warrior spirit is at an all time low. I'm still happy and enjoying my life, I'm laughing a lot, but deep in my soul it's stormy.

I don't need anyone to fluff me up and build my confidence if it isn't genuine, but if you could be strong for me, I would greatly appreciate it. I am unable to bear more than my load, and I'm sorry for that. I wish I could be stronger.

Chicago

Hello Friends! Dan and I just got back from our childhood buddy Dal's wedding in Chicago. It was gorgeous out there, perfect weather, tons of friendly faces, and we are both exhausted. If there is such a thing as too much fun, we had it :) Islanders took Chicago by storm. I'm so grateful that we were able to join in on the fun before I head to LA on next Monday. I have one week to rest up, to get back on track, to walk and run and exercise my body. I can't believe that it's already time for the clinical trial. I feel like I'm getting ready for the SATs, to head to college, to run a half marathon, for graduation, for another half marathon, my first solo intercontinental flight, my move from Fort Worth to Wenatchee, for the first brain surgery, and every little challenge in my recovery, wrapped into one. Here are a few photos from our trip, I'm off to take a nap :)

The Wenatchee fires