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Thanksgiving

Happy Thanksgiving everyone! Hope you were able to enjoy friends and family – we’re back in Friday Harbor, the homeland. Enjoying every moment. The celebration is not over, but I already have to say that this Thanksgiving is the best yet. Pre Turkey Trot Mid Turkey Trot (paused to take a weird selfie) – the race literally runs out to my old house and back. Unfortunately, it’s behind Dan’s noggin. Post Turkey Trot I’ll bet we get MRI results this week. M.R.I. That’s the last time I use those letters until after the weekend. Dan’s chomping at the bit already again, gotta go get bundled up for our morning run. Love to all!

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Don’t Fear Germs

I’m miserable. But I’m excited. I’ve had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.) Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I’m not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn’t getting loose so the coughing didn’t last. The weird thing is that I’ve been feeling hot for the last week, and achy. But I always find a way to reason it out. This brings me to yesterday. Finally, so miserable that I couldn’t move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn’t weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to…

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It’s Okay To Be Weak

Well friends, we have yet to hear back about the third party results, which is just fine with me. For the first time in a long time I’m not anxious to hear the outcome. I just want to relax and not worry, and breathe, and live. I don’t have the discipline that I used to. I am unable to restrict my diet, and am unable to rigorously exercise. I do not have the drive that I once had, which was born out of fear. The unfortunate thing is that fear was a bear, chasing me through the forrest, and without that same neurotic stress, I am unable to rise to the challenge of forgoing food, or drink, of pushing my body to extreme lengths for cardio or weights. I walk often and try to jog every once in awhile. I hit the sauna here and there, but I am in a state of relaxation, both mentally and physically. I am literally enjoying every moment. I spent years, several years, after diagnosis, trying wild extreme diets, taking hundreds of pills a day, trying random and scientific based treatments, and I’m tired. I don’t have it in me anymore. I honestly don’t know how I ever restricted myself so diligently, so harshly. I’m just bone tired. But I’m happy. I’m thicker, and I don’t love that, but I don’t have the heart to discipline. It’s embarrassing that I can’t practice what I preach, but it’s the truth. It has been over 68 months since I was diagnosed, and 65 of those I was on crazy cancer diets. At times it has been a complete obsession. And when it wasn’t an obsession it was the root of shame due to moments of failure, or stress from expectation. Living with cancer is living in…

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UW Radiology Report

University of Washington just emailed me my radiology report, and since I can easily copy and paste, I thought I would post it here in case it might be helpful to others. UCLA doesn’t provide a radiology report at their Tumor Board, however in the last post I included their opinion on my brain scan (hint: they think my tumor is growing). Now, because of the differences in opinion, we wait for the private third party review from Iris Radiology to determine if I’m in the early stages of a recurrence or whether the differences in findings are more a matter of MRI reading techniques. Narrative EXAMINATION: MRI BRAIN WO/W CONT CLINICAL INDICATION:History of left parietal infiltrating astrocytoma status post resection. TECHNIQUE:MRI Head Tumor (Primary) contrast plus post GD SAG T1 (Glioma /GBM)(B 2PT) Non-contrast Head: Axial T1, axial T2, axial diffusion. Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal & sagittal T1. CONTRAST:Prohance 15 ml 10/24/2015 08:10 AM INTRAVENOUS COMPARISON:Multiple prior MRIs of the brain, most recent dated 3/22/2015. FINDINGS:Post surgical changes compatible with left parietal craniotomy and tumor resection again noted. Surrounding FLAIR hyperintensity is unchanged. There is no evidence of new areas of enhancement at the resection site or elsewhere in the brain parenchyma. A right frontal developmental venous anomaly is noted. Incidental note of small intracranial right vertebral artery flow void again noted and unchanged from 3/22/2015. Otherwise, the major vascular flow voids through the circle of Willis are patent. The ventricles and sulci are unchanged in size. There is stable ex vacuo dilatation of the left lateral ventricle due to volume loss. Orbital structures and extracranial soft tissues are normal. ATTENDING RADIOLOGIST AND PAGER NUMBER ##############

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Updated MRI Results

I’m in my happy place, Green Lake. I mean, don’t get me wrong – Edmonds is my home. We’ve grown roots and continue to be nurtured there, but Green Lake has held my hand throughout the majority of our cancer journey. I always find myself at Peet’s Coffee & Tea shop at Green Lake sipping on a matcha latte (unsweetened, almond milk – please don’t forget the extra scoop of matcha) when I’m dealing with MRI madness. It’s my treat on MRI days. It’s where I go to celebrate reports, or stress over the ambiguous findings.  I’m here in the city for a last minute doctor’s appointment, and have been managing the details of our “recurrence” all day (emails, phone calls between doctors and insurance). Here’s the information from UCLA.  UCLA: They reviewed your scans last week [at the tumor board] and feel like there are mild subtle changes so it is suggested that radiation would be a good thing to start at this point. They also mentioned a clinical trial involving an IDH1inhibitor. Perhaps you should meet with them [radiation oncologist & neuro oncologist] to discuss your options. Me: When the tumor board meets, and there are recommendations given, is there a report that I can access and review? I assume there is some sort of documentation of the process. UCLA: We don’t really have a written report per say that I can provide you. Me: I’m curious because, when you say there has been progression, I would like to see the measurements, and assessments of the increased disease. As you know I send the copy of the UW’s MRI scan to UCLA, along with the radiology report from UW, and their report didn’t reflect your findings. It’s confusing to me that you would find changes that they did…

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First Steps

I can’t easily type because I went all gung-ho around the house yesterday, trying to distract myself as we await further information from UCLA about my recurrence, and I sliced myself. As we wait, I grabbed a copy of all three of the most resent MRI scans (I keep copies of everything) and we shipped them to an independent radiology reading facility that we’ve used in the past. Hopefully they can give us more information about what’s going on in my brain.  It’s always hard when doctors don’t agree about your condition, but (as a few people mentioned) it’s better than a definitive recurrence. That implies it must not be obvious growth. Either that or someone was asleep at the wheel. I’ll keep you guys posted on anything we find out along the way.

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Shit Shit Shit. Another Recurrence.

My my mind is all over the place. I don’t quite know what to do. Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don’t understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown. I need more information. I’ve asked for copies of the notes from the UCLA tumor board, and their radiology review. I’ve asked for a callback from one of the doctors or physician’s assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It’s a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn’t they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.) I’m not surprised that the tumor has grown, it’s what they do. But I’m not going to start a treatment program based on an office worker’s forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it’s always important to treat them with respect, but I also believe that…

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UCLA Tumor Board

Morning Guys! Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time – it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn’t mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend’s house and upload the report. It took a total of four minutes! Talk about fast. That’s way better than the several weeks it usually takes. It’s not that the US mail takes that long, it’s the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board. Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It’s disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Na├»vely, I keep hoping that the tumor has shrunk, but no such luck. If we’re lucky, we should have an update on the status of my…

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MRI RESULTS!

Here are the important things: 1. Surrounding FLAIR hyperintensity is unchanged. 2. There is no evidence of new areas of enhancement at the resection cite or elsewhere in the brain parenchyma. 3. A right frontal development venous anomoly is noted. (?) 4. Stable post surgical changes related to left parietal craniotomy and tumor resection without evidence of recurrent disease. Looks good to us!!!! Time to jump for joy and make Dan a pack lunch for his second shift at work today. At least these long hours can keep his thoughts happy! Thank you for the love and support, and the ride to the hospital from my friend Jozann! What an angel she is. I told her to just drop me off but she wouldn’t leave me by myself and stayed with us the entire time. Now THAT is a friend. You guys sure know how to support a girl. Phew!!!! WOOOOEEEEE!!! Now I can stay up all night reading my book about the Lusitania disaster. Hey, we all gotta have ways to celebrate. Ha! Final results from UCLA should be in a few weeks, but with no obvious regrow, I’m a happy girl!

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When You Can’t Bear it Alone

You guys are so sweet to me. Thank you for picking me up with the kind comments. I always feel awkward by how nice you all are, feeling like I don’t deserve it. But it makes me feel incredibly special too – regardless of whether I feel like I don’t deserve the praise. It took some time, but little by little I started feeling better. I did it by forcing myself to get out of the house and back into my walking group (other than today, but it’s because I couldn’t sleep last night and was afraid I might have a seizure). They always make me smile, fill me with hugs, and encourage me – as they do with everyone else in the group. It’s more like a mutual appreciation and laughing club, that walks. In fact, I feel like I stole that description from one of the fabulous women in the group. So far I’ve been taking it up a notch by running to and from the walking group (other than accepting a ride home one day). Those stupid amazing endorphins really do change your mood. It’s annoying but true. Aaaand convenient, I guess (she said begrudgingly).  The MRI is set for this Saturday, with preliminary results on Monday. (I just go to the UW records department to get the results myself – no doctor.) I’m stressed, and not sleeping well, but I’ve laid off the anti-anxiety pills because I’m afraid I’ve become dependent in order to sleep. I never want to be dependent on anything. *isnt that ironic*  As I type this, Dan is taking his three hour nap, he’s currently scheduled for four days of 18 hours per day of work (trying to make up for the added expense of heading back to Germany unexpectedly for more…

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