Thursday, April 29, 2010

Back in the ICU

Okay... surgery #2, complete!

Jess did really well (again). Doctors said they relieved the pressure and she should now heal a little quicker. Kaal will be at her bedside tonight so she's in good hands.

Thanks again for all the support and prayers. Believe it or not, all of us can feel it, especially Jess.

- Jess (Abu Dhabi)

Quick Round in the OR

Team Jess -

This is Jess (Abu Dhabi). So we've been having increased symptoms since last night and into today. The team of physicians scheduled a CT to just confirm everything was okay. They found a few complications which unfortunately means she needs to head back into the operating room. She's in the OR now.

The family, Danny and I find ourselves in the surgical waiting room again. She'll spend another night in the ICU.

Another quick round of prayers from everyone please.

Wednesday, April 28, 2010

Movin' on Up!

Jess has some pretty fancy new digs. She's been moved into a beautiful room. She's got a single, so no neighbors to disturb. Also, she has a window with a great view and lots of fancy gadgets. She's in great spirits, but definitely sleepy and taking it easy.

For those of you who wanted to send flowers, she's in room #4230. She's only here for another day (or so we've been told) so if it's not going to be delivered tomorrow, don't worry about sending them. She'll be doing lots of recovering at our "home-away-from-home" so there are plenty of opportunities.

Thanks again!

Jess (abu dhabi)

It's like a vacation, it even has a road trip!

That was Jess' comment this morning. She was being taken down for an MRI to see how things progressed overnight. She is smiling, happy and relaxed while she is being attended to 24/7 by the amazing staff and her loyal boyfriend.

She will be moved into a regular room a little later today. I don't know the room number yet as some of you have asked about sending flowers. I think if you just have them delivered to university of washington hospital, they should be able to help locate her. If I do find out where exactly she will be, I'll post it on.

Please don't feel obligated to buy the flowers since she's only going to be here another couple of days and there's a small army of Jess supporters. May be kind of difficult to carry out 200 bouquets of flowers ;-).

She can definitely feel all the good vibes and knows everyone is still with her. She sends her love and thanks to all of you!

Tuesday, April 27, 2010

Proudest Brother

All of you know how special my sister is.  Not just from how we know her in our daily lives, but through her positive perserverence in her time of trouble.  What defines a person is not how they deal with the days and events that are positive, but how they handle the tough times.  This has not only been tough, it has been nearly unbearable for all of us.  By "all of us" I mean those of us who have had to wait for Jess to go though all of the trials associated with this surgery and the surgery itself. The only one that has made any of this seem bearable is Jess herself. She has kept all of us not only sane, but positive and many times happy and laughing. I cannot imagine a stronger person in a similar circumstance. She defines: tough, compassionate, positive, selfless, supportive and more. I am in awe of what an amazing person she is. She will take none of the credit for carrying us all through this, but deserves all of it. Thank you everyone for supporting her.  It has meant a lot. God bless you all.


ICU Update

Hi friends & family,

I'm hanging out in the lobby of the ICU. At this point, there's not a whole lot to tell. Jess is resting in her room, Danny at her side. The latest update from one of her doctors is that she's doing really well. The girl rocked it during the surgery... as always.

I just wanted to take a few minutes to reflect on what I've witnessed over the past few days. Everyone says that all families have their problems, but I'm fairly certain the Oldwyns are perfect. I've witnessed such amazing strength, love and support from this group of people. Throw Danny, myself and her amazing friends and you've got a regular party. We've laughed together so hard that my cheeks hurt. The stories, laughter and even some tears have made the time pass and gave Jess the strength she needed to go into that OR with conviction that she would conquer!

I know we all love Jess, but I think it's also important to applaud the people who have influenced her to be the amazing person she is. I look at Bonnie and I see Jess' kindness, sentiment and never-ending love. I look at her dad and I see her strength, wit (although I think Bonnie is in there too) and independence. You look at Kaal and you see where she gets her humility and protectiveness from.

That's not to say that the newer additions to her family haven't had an equal influence. Danny is a boyfriend machine. The man is sensitive, protective, respectful, affectionate, loving and supportive. He holds his head high when the rest of us can barely move. Then he comes and holds our heads for us too. It's amazing to see from an outside perspective what true love looks like, but just wanted to make sure everyone knows... it does exist.

All of Jess' people (and this includes all of you) have influenced her life. She's my best friend and she's hugely influenced mine. So thanks to all of you for being a part of her life so that I could have her be a huge part of mine.

xoxo - Jess (abu dhabi)

Surgery is done!

Okay guys... ready for the big news?

Surgery is done and it went really well. She's in the recovery room and already alert. Doctor is happy with the results.

Thank you to everyone for all the amazing support. She'll be spending the night in the ICU tonight so they can keep a good watch on our girl.

Hopefully heading home day after tomorrow as long as the doctor's feel she's doing well.

We'll continue posting updates with her progress and hopefully she'll take up the task herself in a day or two if she feels up to it.

Thanks again to everyone!!

Jess (abu dhabi)

Surgery Update

Hello Team Jess,

This is Jess (Abu Dhabi). Just got an update from the surgical team. They are almost wrapped up, getting ready to close up our gal. They said things are looking good and we'll get another update in about an hour or two when they finish up.

Thanks to everyone & keep up the good vibes for the final stretch and recovery.

"In a world that needs more dancing, she's a hula girl at heart."

 I just stumbled across the above phrase (thank you Jimmy Buffett) and I'm not sure why, but it reminded me of Jess. I've never seen the girl Hula but I'm pretty sure if given the chance she could work the heck out of a coconut bra and grass skirt.
(If the Buffett reference didn't tip everyone off, this is Courtney; Jess' sister in law writing this.)
I think that in this world we get back what we give. All of the love, support, sweet acts of selflessness and kindness that Jess has received are a testament to how much she gives to her family, friends and her world.

As I write this eleven of Jess' family members are all gathered together here in the hospital waiting room. And we're...waiting....and maybe in our "real lives" we're all very patient people but patience be damned. This waiting sucks.

There's a phone on the desk in here and every few minutes it rings -doctors calling to update family & friends- and everyone in this room catches their breath for just a moment....

Here's what our waiting room looks like, maybe this will help all of you readers feel like you're here with us:
Team Oldwyn takes up a good half of the room. Grandma G (Jess & Kaal's grandma), J-Z (the "other Jess" who, fyi, looks strikingly gorgeous bald), Bob (Jess' dad), Aunt Anne, Auntie Lynn, Uncle David, Danny (Boyfriend of the Year nominee), Bonnie (Jess' mom), Kaal, Isla (Jess' niece, my daughter, she's 1 year), Me and Madeliene (a friend of Bonnie's from Elementary School -yes, Elementary school!).

Isla is the official distraction and she's taking her job very seriously. Right now she's dumping Oyster Crackers all over the floor. But don't worry, she's picking them back up, putting them back in the bag and then taking them out again to eat them.

Also in the room is a bearded guy in a red Budweiser shirt who's passing the time drinking Coke and eating a Snickers bar. He keeps checking his phone and I feel for him that he's here all alone. How lucky Jess, and all of us are, to have each other.

There's a woman next to us also sitting by herself and the phone just rang for her. After she hung up she let out an audible sigh. Hopefully of relief.
At a table in the middle of the room is a man and woman who seem like they've been here before. They seem very prepared, kind of businesslike and seem pretty positive. The man's knee hasn't stopped shaking since I've been here though.

An older couple just met with a surgeon and they look okay. She's got short, spiky hair and is sipping coffee out of travel mug, her hand is shaking a bit but she's got a smile on her face. Her husband has on a Denver Broncos shirt so I'm not even going to talk about him. Go Seahawks.

There's a handful of other souls in this room too and I can't help but wonder who they're waiting for. My wish for them is that their loved one is as strong as our girl and that they have as much love and support as Jess, and we all do.

We'll update this as soon as that phone rings and it's for us.

Jesse's Team.

Hello everyone,
This is Danny (Jesse's boyfriend) with a quick update. Jess was just wheeled into the operating room and wanted me to let everyone know how she was doing. First off, she wanted me to let everyone know that she sincerely appreciates all the prayers, love and support that everyone has sent her way throughout this process. She said it was the one thing that lifted her spirits when she would get down. As she was awaiting entry to the operating room, she said she could feel the love of everyone enveloping her. So please continue to send your positive thoughts her way so when she gets scared again they will help her get back to a positive place. Secondly, Jess wanted to tell everyone that she is in very high spirits. She said 'I feel like I'm at a spa or something'. Everything from the special socks to the heated air blanket has put her into a state of extreme comfort. She was actually worried that she was to relaxed, and not alert enough for her medical care providers. She has fallen in love with her entire team and already knows their entire background stories. There is 'Daisey', the southern primary nurse who shares her sarcastic sense of humor, the tattooed up nurses assistant who shares Jess's despise for lactose, her anesthesiologists with her thick Romanian accent (who actually teared up when Jess was in pain from an I.V.), just to name a few. Everyone that has worked with Jess this morning has put her at ease and only increased her confidence in the entire process. I'm sure Jess will retell these stories in her own detailed way, but she wanted to let people know that she was doing good, and felt she is in competent hands.

Open Letter To My Family

I'm writing this letter the night before my surgery for my friend Jess to post in the morning after I get wheeled away into oblivion.

Mom. You are the most compassionate, loving, generous, silly, affectionate woman. You've taught me to face hard issues with tenacity, strength, a smile, and perseverance. I'm grateful for our long talks, your wisdom, your laughter and frankness. You've helped me evolve into the woman that I am today, and I'm proud to say that I think I'm a lot like you. In fact, it's been my goal. I hope I can be as amazing as you are, always full of hugs, and sincerity. You're my soul. I admire you so much, and I'm honored that you're my mom and a best friend.

Dad. Thank you for protecting me. You've been my savior throughout my life. You're always the first in line to offer help. You're always around my house, helping rip out dead plants, teaching me how to use power tools, passing along all your little tricks to make my life easier. You set me up to take care of myself, and yet if I ever need you, actually usually before I even know that I need your help, you're already there pointing out how to fix things. And it's kind. You're so gentle and helpful, not pushy or mean. Always helping, all the while making me laugh, from the bottom of your heart. You're a great role model. Helping others. Always.

Kaal. Where to begin. You are my big bro, a best friend, a teacher, a tutor, a confidant, a protector, and a hero to me. You've always watched out for me, reading books upside down (it's the thought that counts), trenching through swamps for frogs, helping me get my boots unstuck from the mud, throwing men against walls when they just wanted to introduce themselves, tossing your arm around me and telling me about fishing lures (and then forgiving me when I accidentally dumped your tackle box in the reservoir). I was honored to be the best man at your wedding. I'm honored to be your sister. You are hilarious, you have the best bear hugs, you watch over me, you are my guardian. You are irreplaceable. I'm so grateful for you.

Danny. You're such a light, such a joy, full of laughter and kindness and yet grit and strength. You've been compassionate and selfless while you've held my hand through this process, never failing to sneak me a hug, a kiss, or whisper an epiphany of inspiration. Thank you for helping me tackle this epic battle. Thank you for loving me, and witnessing this progression. You lift my spirit when it lags, and you know just how to help me laugh it all off when I just want to toss around the dark humor. You are my rock.

Jess. You flew across the globe the second you heard my diagnosis. You've cooked, you've cleaned, you've made list after list and made me laugh like a raving lunatic. You shaved your head with me in the most selfless act of camaraderie. You're the glue that holds this house together, knowing just when to check in with my mom, play a game with my brother, hit the shops with Courtney, distract, entertain, assist. You are amazing. You've been living on a couch for almost two weeks without a single complaint. You are a miracle. I am so blessed to have you as my friend. Thank you. Thank you. Thank you.

Courtney. The laughing, dancing, jumping bean, "We HAVE to dance....IT'S MADONNA!!!!" Thank you for the smiles, and the magazines, and the big earrings. You know just how to help me feel like a woman, and then laugh my pants off at the ridiculousness of the whole situation. You're patient, and supportive, and you know just when to sass it up and egg me on. You make me laugh so hard, and yet you know when to sit back and just read and relax. You're an excellent combo. I'm so glad you're my sister!

If all has gone correctly, this post is being read by people while I'm already gone with the doctors. Possibly already open-aired in the cranium. I will make it through. I am powerful. I am loved. I am tenacious. I'm a problem solver. I'll hold my humor until they get the work done. Thank you for the prayers, the kindness, and the energy, I can feel it. I feel it all day everyday. I will not let you down. I will conquer.

Monday, April 26, 2010


Yesterday my hairdresser Jesse, who's been in my life since I was a wee fourteen years old, provided a safe haven in his Seattle townhouse for me to shed my follicles in privacy.

I'm forever grateful for the compassion of those around me. I can't even begin to express my gratitude.

Divide And Conquer

Success! I slept in until 4:30am! I feel heavenly, sitting here with my jet black mug of mud otherwise known as coffee. Life is good. My head is bald and although I feel exposed, I feel gorgeous.

After our ceremonious shaving yesterday, my mom, dad and brother hightailed it from Seattle over to Wenatchee to try and squeeze all of the work at the business down from one week into one day. They're trying to milk as much productivity and function so that we can try to maintain a living, keep the customers happy, and pay the bills. My family is AMAZING. They divide and conquer.

In 23 hours and two minutes I'll be "electrobed" and ready for slice-n-dice. I'm getting excited! I'm about to embark on a sci-fi journey that makes me feel like a cross between GI Jess and Robo Jess. Not quite the bionic woman, but still cool.

Sunday, April 25, 2010

Spongebob Squareface

I feel like the days are sifting through my fingers like sand. I have fifty hours (but who's counting) until I check in for surgery.

After trying to gracefully sneak out of bed a few minutes ago at 3:00am, and yet thudding into the wall (thankfully, no stirring movement from various bedrooms), I'm sitting at the dinning table wide awake which unfortunately sits in Jessica Protas's new living quarters (my friend who instantly flew from Abu Dhabi to be with me). Luckily, she's restless right now too. After a healthy sob and hug session, which oddly enough is out of character for us at the moment - not too many tears so far in this ordeal - we're back to what we do best, solving the world's problems beginning with the fact that my face looks like Spongebob Squarepants.

The four cycle daily doses of steroids are changing my facial features and really freaking me out. I realize that the look of my face should be the least of my concerns, but when I run my hands across my cheeks and jaw it's an eerie feeling to lack recognition. I guess I should get used to it since I'll be bald within 11.5 hours and that will be a whole new sensory issue.

I feel like I have so much to say. I don't want to let go of THIS Jess. I don't want to lose this Jess. I still can't truly grasp what's happening in my life. Each day there's new twists and turns. There's new emotions, new fears, new tests, new insight. I've always loved reading, and somehow I feel like the story of my life, this story, is just unfolding page by page in front of me. I've always been curious what it must be like for those going through huge obstacles and now I'm seeing first hand what it's like; but somehow, I still can't grasp completely that it's happening to me. I guess I don't even see how anyone could grasp it. It's life, a day by day process until the end. You just grab onto the hands around you, and walk through it.

Saturday, April 24, 2010

Taking It For The Team

Lots of thoughts swirl through my mind throughout the day. The most encouraging concept is the feeling that I'm taking a hit for the team.

Statistically, people get tumors. It's what happens. I'm grateful that it's happening to me, instead of the people that I love. I'd take this over my family, over my friends, over my acquaintances, even over strangers. I believe that the fact that I'm a notch on the brain tumor list removes another person's name from the board. And it should be me, I have a security net of hundreds of people, from my innermost circle in this room to souls spread all across the globe. There people praying, lending support, sending love, and filling me with strength so that I can break through and conquer this adversity.

I'm serious about this post. I'm not a martyr. I don't regret any of this situation. I'm not angry. I'd be lying if I said I wasn't scared though. I like my personality. I like my ability to adjust and adapt and grow as a friend, as a girlfriend, as a sister, as a daughter, as a human. If I change completely and my loved ones have to grieve for the Jessica that they've lost, I hope that I can at least evolve into a wonderful new Jessica with determination, tenacity, and soul. Only time will tell if I'll come out of this with the same cognitive abilities, language and movement; the immediate outcome, post-op, is out of my hands.

Thank you to everyone for the continued love. Thank you to Laura for giving my family her house in Seattle, which carries a zen energy that makes me feel like I'm living in a spa. I have been moved beyond words by the kindness of friends, and friends of friends, and friends of friends of friends.

Tomorrow we conquer the rite of passage that will be the head shaving. Photos to come.

Friday, April 23, 2010

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.

Thursday, April 22, 2010

Nocturnal Olympic Athlete

I just woke up from another bout of night sweats. They're really getting old. The worst part, is that even as I write this I realize how stupid I sound. I'm complaining that I'm so hot that the coldest air conditioning can not stop me from sweating like an Olympic athlete, and yet I'm going to have half of my skull removed and my brain pitted. Doesn't really make sense to complain about the discomfort already, but hey, it's where I'm at.

I think the night sweats are due to the steroid regimen, which instead of bulking me up like The Governor, are making my face puffy and round. Oh well, maybe it'll erase some of my crow's feet.

Wednesday, April 21, 2010

All Hail The Chief

Just received my phone call from Kenny at U of W. After the panel reviewed my case they decided to keep me with the chief. My first appointment is on Friday morning at 10:30. Here's the information from his faculty page:

Daniel L. Silbergeld, M.D.
Arthur A. Ward, Jr. Professor
Chief of Neurosurgery at U.W.M.C.

Dr. Silbergeld is the Chief of Neurosurgery and an attending neurosurgeon at the University of Washington School of Medicine, holding both an Professor of Neurosurgery and an Adjunct Professor of Pathology.

He received his medical degree from the University of Cincinnati College of Medicine in 1984. Dr. Silbergeld then completed a neurosurgery residency at the University of Washington, followed by a two-year research fellowship in the Northwest Neuro-Oncology Research and Therapy Section as well as two additional fellowships -- one in neuro-oncology and the other in epilepsy surgery.  After spending five years at Washington University in St. Louis as assistant professor in the Department of Neurosurgery and Neurobiology, he returned to Seattle in 1997 after being appointed to the faculty in the Department of Neurological Surgery at the University of Washington.

Patient Care
Dr. Silbergeld's clinical practice focuses on brain tumors as well as epilepsy surgery with special expertise in functional brain mapping for language, movement and sensation.

Dr. Silbergeld’s research laboratory is currently investigating glioma invasion and motility. His laboratory is working with Dr. Pierre Mourad to investigate the use of high-intensity focused ultrasound to temporarily disrupt the blood-brain barrier to enable delivery of chemotherpeutic agents to brain tumors.

"When participating in teaching, research and patient care, caring for the patient and providing continuity of care is my primary mission. Participating in multi-disciplinary teams allow a unique patient-based system that offers excellent state-of-the-art care that cannot be provided by individual physicians." - Dr. Dan Silbergeld

Education and Training
1979 BS in Psychology, Duke University, Durham, NC
1984 MD, University of Cincinnati College of Medicine, Cincinnati, OH
1984-85 Internship in General Surgery, Department of Surgery, University of Washington, Seattle, WA
1985-90 Resident, Department of Neurological Surgery, University of Washington, Seattle, WA
1987-88 Research Fellow, Northwest Neuro-Oncology Research and Therapy Section, Department of Neurological Surgery, University of Washington, Seattle, WA
1988-89 Registrar in Neurological Surgery, Atkinson Morley’s Hospital, St. George Medical School, Wimbledon, England
1989 Fellow, Neuro-Oncology, University of Washington, Seattle, WA
1990-92 Acting Instructor, Neurological Surgery, University of Washington, Seattle, WA
1991 Fellow, Epilepsy Surgery, University of Washington, Seattle, WA
1992-97 Assistant Professor Department of Neurosurgery and Neurobiology, Washington University, St. Louis, MO
1997- Associate Professor, Department of Neurological Surgery, University of Washington, Seattle, WA

Tuesday, April 20, 2010

My Very Own Think Tank

Just got off the phone with Kenny at U of W. We're on a first name basis already. After the chief at U of W looked over my tumor package he put my case up for the Tumor Board Conference that occurs tomorrow morning. The board consists of various neurologists, neurosurgeons, anesthesiologists, radiologists, and nurses. Together, they will review the specifics of my tumor to decide on the proper procedure and most suited neurosurgeon. According to Kenny it will probably still be the chief, but after the conference we will have more information.

We should hear back from Kenny either tomorrow afternoon or at the very latest Thursday morning. With that word will come further instructions, most likely leading me to a Friday appointment with the chosen surgeon.

I still can't believe this is happening. As Kenny was running me through the above conversation, I was honestly waiting for him to say that I wouldn't need surgery or treatment. Somewhere in the back of my mind I'm still waiting to hear that the large mass is actually just a rare species of tapeworm, and all I need is a bottle of antibiotics.

Monday, April 19, 2010

Riding The Rollercoaster

After promising Danny and Jess (my two caretakers) that I could calmly wait until noon today to hear back from Harborview, I cracked at 11:30 and had Danny call for an update about my condition. Turns out Dr Sekhar HAD reviewed my file and the chief of neurological surgery over at U of W is the perfect fit.

I should receive more information hopefully tomorrow or Wednesday, after the U of W surgeon reviews my scans. In the meantime, we sent all of my documents over to Swedish as a backup plan.

I'm starting to feel a much higher sense of peace, and confidence after speaking to the team of neurosurgeons at Harborview that hold such knowledge, and experience. When the first neurosurgeon in Wenatchee wanted to operate in under 48 hours it was downright petrifying. While the Seattle team still wants to conduct surgery as soon as possible, they do not feel that I'm at the extreme level of imminent danger that the Wenatchee surgeon expressed. I'm not sure if he was just drooling over the concept of hacking my brain, or if he truly was panicked about me dying in the next few days. Either way, it's nice to have all these teams of doctors working their magic all around Seattle, trying to fit my lemon tumor into the right hands. 

With that said, I'm not going to lie and say that it's easy to be this patient.

Sunday, April 18, 2010

Craniotomy, Not That Bad

I'm still sitting here playing the waiting game, which has its ups and downs. On the bright side, I get to spend the weekend with family and friends relaxing, and contemplating what a killer life I have (no pun intended). On the down side I just want them to saw open my head and dig this puppy out so that I can start recuperating.

With all the extra time on my hands I decided to start a fun new game...

Craniotomy, Not That Bad

#1. I have a very close friend whose son was born with Congenital Scoliosis. He's now almost four years old. His case is so severe that in the next 6 months to a year he will begin a series of surgeries on his spine that will occur every 6 months until he's around 16 years old. In the initial surgery he will have a rod placed at his spine, and then with every reoccurring surgery they will slightly extend the length of the rod until he's done growing. This poor little blond fella that looks like he fell off the Jerry Maquire movie case has no idea what's in store for him. His process is going to take over a decade just of surgery, let alone all of the other complications. Therefore, Craniotomy, not that bad.

#2. Another friend, Heather, has a daughter (Hayden) who survived a dresser and television falling on her skull. She was taken to the neurosurgery dept at Harborview Medical Center where a team of doctors had to brace her head, and do surgery by braille to locate a pea sized place in the dead center of Hayden's brain to relieve pressure so that she didn't die. Craniotomy, not that bad,

#3. My uncle Michael (not really an uncle, but one of my dad's best friends) shattered his femur in over 50 places back in the 70's in a mid-west snowmobiling accident. To repair his leg they placed him in traction (hooked up to a bunch of pulleys and wires, with screws placed in the bones once the pieces had been reattached) immobilized him in a hospital bed, and had his leg raised for three months while the bones fused. Wanting to be closer to his wife, they placed him in a full body cast and transferred him via hearse for 28 hours to get back to Seattle. Once in Seattle they immobilized him for another full month. Bedridden for four months. Craniotomy, not that bad.

#4. Another of my friends, Kristen, is trying to support her mother as one of her mother's best friends deals with the tragic news of a malignant brain tumor (almost certainly a death sentence, she was told). The woman is beginning to undergo chemotherapy and radiation. They don't know if she'll live. Craniotomy, not that bad.

Thanks to my friends and family for sharing their stories. There are so many situations that are much scarier, more painful, less hopeful, and more physically and emotionally taxing. We're a huge team of people on this Earth and we get through each challenge together.

Friday, April 16, 2010

We Eat Tumors For Breakfast

The men in my life decided to give me a preview of my future hair style.

It was a great morning of hair liberation, but this afternoon when Danny followed up with Harborview we found out that they were unable to review my screens and that all will be reviewed on Monday. It's a pretty big bummer, and a little scary that I'm risking extra days since the neurosurgeon here in Wenatchee was extremely opinionated that I needed to get in for surgery ASAP (yesterday at 8:00am). I'm not sure how to consolidate all of my options, or figure out how to know when I'm making the right choices. I guess I just go by my gut. If I don't survive the weekend, please right on my headstone, "Should have followed the 1st neurosurgeon's surgery suggestion!"

At least I had some company for a pedicure. We're practically evil. We shave off all the men's hair and then pamper ourselves. I think I can do this tumor thing.

Thursday, April 15, 2010

1st Neurosurgen Apt (Wenatchee)

Wow. So much has happened in less than 72 hours that I don't even know where to begin.

First of all, I can not believe how loved I am - I have the best life and the most amazing group of family and friends, thanks to everyone that has been bombarding me with love and support through emails, texts, facebook posts, word of mouth, etc. I feel really powerful right now, like I can conquer the world!

Today was great starting out - I've been using my trademark "black humor" which has been really helpful, but then sometime around mid-day I had a reality check and burst into tears that this is going to be such a burden on everyone around me. I'm aware that this is going to be a lot of work for all of us, and I'm really grateful for the all of the love.

So - 2nd Jess Update
I met with the Wenatchee Neurosurgeon yesterday afternoon. He gave me the diagnosis of a Parietal Meningeal Lateral Posterior tumor (don't remember if that's the correct order of the words because I don't have my notes with me). When I looked at the screens from my MRI and Angiogram it was pretty crazy. The tumor is huge. I guess that's why they want to operate immediately. It's pushing the left side of my brain over the midline to the right side of my brain and causing outward symptoms.

They're worried at this point because the tumor is pushing down on my brain onto some veins and an artery and they're worried that the pressure could cause a rupture, seizures, a stroke, etc.

The Wenatchee neurosurgeon wanted me in for surgery at 8:00 am this morning, but I told him that I wanted a second opinion. He is one of two neurosurgeons in Wenatchee and they cover everything below and above to both borders of the state. They're the only neurosurgeons between Spokane and Seattle.

I didn't want to be insulting - but this IS my brain we're talking about here, and after he gave me an overview of the craniotomy, using terminology like, "You will take a nap, then I will scoop it out like ice cream." After that, I really needed another neurosurgeon (from Harborview) to review my file. Right now I'm in a waiting game. All of my film, scans and my chart are waiting at Harborview for review by Dr. Sekhar the head of the neurosurgery department (and widely regarded as one of the top neurosurgeons in the world). They will review everything tomorrow (Friday) and I should hear back on Monday regarding surgery.

I want the best of the best for my surgery, but if I have it in Seattle it's not easy to get home. After surgery I can't go over the passes for a month, can't drive for a month, can't lift anything for a month, oh ya - and I'll be bald. Too bad the bad hair will last for a little longer than 6 weeks. I'm not allowed to put my head lower than my heart right now, but this morning when I came up with my new name GI Jess, I was dying to do a battle roll off my bed and book it to the bathroom just for kicks. Oh well. In time. 

Either way, since I have to get the tumor removed, I'll be getting the craniotomy, but I want to feel really confident and comfortable during the process. Better to make sure that we've got a great team of doctors, because I'm set on living through this!

Anyway, my diagnosis:
*I have what is believed to be a benign tumor (they won't know until they remove it and biopsy it)
*Due to its size/characteristics it's believed to have a high probability of recurrence over the span of my lifetime in different areas of my brain (MRI's for life baby!)

I feel pretty good about what's going on. I feel insanely lucky that the tumor is on the outer area of my brain, and it's believed that I won't lose much if any of my brain function (some would argue that what's left after my college days is questionable anyway, so I'd like to keep what I've got!).

Tuesday, April 13, 2010

Urgent Jess Update

The email I sent to friends and family after the results of my scan:

Friends & Family,

Just wanted to send a quick note to let you know that I've had some extremely unexpected news. After an insanely intense debilitating headache that occurred last Friday while snowshoeing with Danny (and a couple of re-occurring headaches on Saturday and Sunday), I scheduled an appointment to meet with my doctor yesterday morning (Monday).

I told her that I had such a bad headache that I couldn't walk or see for about 90 seconds, and that the left side of my head, and lower back of my head, felt like they had a lot of pressure, and continued to have a pretty bad aching sensation.

I pressured her to sneak me in for an MRI scan immediately, but there were some hoops regarding my insurance so we planned a CT for today.

This morning I went in for my CT scan, at which time they said that I would instead be receiving an MRI (at which point I thought, "ooooh, UPGRADE!!"). Once in the room for the MRI they told me that I would not only be having an MRI but also an injection to see my brain even better (at which point I thought, "Cool! Double upgrade!!!").

After the procedure the radiologist looked at me funny and asked when my followup exam was (and I told her Friday), she told me that they would have my results shortly. I only got halfway home on my drive before I had a call from my doctor who told me that she had been on the horn with the neurosurgeon Dr Higgens and that I have a massive brain tumor and an AVM. I asked her if I was going to die, and her response, "We hope not."

She wanted me to turn around and head back to the hospital because they were holding a position at the CT dept for an Angiogram as soon as I could get in. Of course, I then called Danny sobbing and told him I couldn't talk but that I had a brain tumor. Then, I had my parents come get me from my car - I couldn't drive because I was sobbing and shaking so badly.

I've since done the angiogram and I just took my first pill to take care of the brain swelling. 

I have an apt with the neurosurgeon tomorrow where he will go over my diagnosis and my options. It all depends on the AVM and the Tumor (I'm capitalizing because I fell like it deserves that kind of punctuation). The two issues are unrelated, but make it difficult for surgery. I have no idea what type of tumor it is. We have no idea what I'm actually dealing with.

Anyway, at this point all I know is that I have a large Tumor in my lateral parietal region and an AVM.

I will be in and out of the hospital in the following days, and it looks like the first brain surgery is scheduled for Thursday morning at 8:00 am.

In the meantime, I love you all - all of my friends and family, and if you pray or send positive energy, please do what you do and think of me because I'll feel all of your positive thoughts. I'm not sure how things will continue from here, and I probably won't be on the phone except for doctors or things of that nature - I've already been on the phone today with three different doctors, two radiologists, and multiple nurses regarding this issue. They are awesome, awesome people, and they're really moving this right along.

Sorry if this email is ridiculously long - but you all know that I'm absurdly long winded.

Please don't be offended if I don't get to your call/text/email - it's definitely not personal. All of my love to everyone - I have been so insanely fortunate in my life - and I can't wait to conquer this - and for the record, I am cashing in regarding this email...any grammatical error of any sort or any particular aspect of my writing that doesn't sound eloquent and mind blowingly witty, is because I have a brain tumor.


No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.

No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.
Related Posts Plugin for WordPress, Blogger...
Back to Top