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Don't let anyone else put limits on your life. You are not a statistic. People live long lives, even with cancer, so don't give up!

 

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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.

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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. ProfessorChief 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 CareDr. 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. ResearchDr. 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 Training1979 BS…

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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.

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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.

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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…

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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.

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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 UpdateI 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…

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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…

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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…

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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…

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