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My Biggest Medical Asset

I have something that will help the cancer patient in your life, something that has been helping me for years. Why didn’t I think of sharing this sooner? I’ve eluded to it, even directly recommended it, but I’ve never included (that I can remember) a true description with photos. I’ve been sharing this info one-on-one with patients and caregivers, but for whatever reason, it didn’t occur to me to officially write something on how I stay organized in the wild wild world of cancer. Any large accordion style briefcase will do. The more slots, the better.Spring for heavy duty, this thing will take a beating with the amount of use it will get. I get copies of every medical record, and I carry this with me to all of my appointments.I have saved many a headache, and lots of time, during meetings because I have my own copies of my various pathologies, radiology reports, etc. This is a mini case that has its own slot in the big case. It holds every single one of my MRI and F18-Dopa PET scan disks. I’m able to pull out any disk that I need, in a matter of seconds. It’s astounding how helpful these disks have been in appointments.It has been common, in my experience, that new doctor appointments often do not receive my records in a timely fashion. By carrying all of my document and disks with me,I don’t get held up with delays or partial information from my doctors, because I’m able to provide the data for review and assessment. This briefcase has been worth its weight in mom’s cookies. Recently, at a new neuro-oncologists’s meeting, the doctor even asked what I do for a living. I replied, “This.” He responded by saying, “Want a job?” For a woman who has disabilities, who…

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A Lauren Taylor Illustration

Look what came in the mail, from the brilliantly gifted illustrator, Lauren Taylor!  (Click on her name and explore her website.) This image, this moment, I remember it like it was yesterday, and yet, in the same thread, it feels like several lifetimes ago. Earlier today, when I was cooking dinner, a wave of shock, and gratitude came over me. You'd think I'd get used to his love, but it still surprises me. Like a stupid cliche, but it's not stupid, and it's not a cliche, it's my life. I was thinking about how deep my love for Dan is, and how mutual the bond. If I never get to fulfill my dream of being a mother, or if I never fulfill my dream of further education, or even a fence around our property, I am and have been loved by a man that treats me kindly, who cherishes me, who hears me, who fulfills my every need, and so much more. I could never have dreamed of a love like this, because I had no concept of the enormity. Oh, to have a piece of art to celebrate the most profound aspect of my life, the bond with his soul. What an honor for Lauren to gift us this. I am in complete awe of this young woman. I think you might be too, if you check out her amazing YouTube videos. Get to know her a little, she's dynamic, and full of compassion - let alone talented. EASTSIDE STORIES Continue reading
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UCLA Tumor Board Results

Dang it if brain tumor life isn’t confusing. At least in my world! I can’t be the only one who has these types of yoyo results. I mean, it’s better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. If you don’t want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping – who knows, maybe the tumor had grown more in the interim, and now they’re even shrinking it? Who knows! I rule out nothing. My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is “comfortable” waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan. Some people might think I’m crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read – learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn’t enough, we will evolve as we always have. It’s confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it’s important for me to stay the course on exactly what I’m doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really¬†need to lower my…

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New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon’s apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It’s gross. Every. Time. I. See. It. The image is from back in April, so it’s not even current. On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue. Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA’s system and hope I get in for next Wednesday’s tumor board. It’s frustrating that they only review cases once a week. If there’s a backlog it can take weeks, even a month, to get results on treatment recommendations. Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

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Introduction to My YouTube Vlog

I’m getting lazy in my old age, and resorting to video blogs to keep in touch.

Okay, I was just cracking a joke, but truth is, I’m having a harder and harder time expressing myself with written words. I can’t even think straight these days. I’m truly bone tired, and that’s why I barely write anymore.

Please note: My YouTube channel will have all the videos, but the BLOG will have all the various posts: video, written, guest, etc.

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Back-To-Back Seizures (Kinda)

Well toots. I had another seizure on Saturday. That’s a fast turnaround since I just had a seizure a few weeks ago. Never a good sign. I was playing with my nephew, who had just finished his peewee football game. His older brother was suited up on the field. We were swinging on tree branches, between practicing touchdown dances, when all of a sudden I felt the seizure coming on. I looked at my eight year old nephew, who didn’t even know what a seizure was, and by the tone of my voice, he knew something was very wrong. I told him, with my bug eyes, to get Dan. I slowly followed, pulling pills out of my purse. There was so much excitement, the fans cheering for the players on the field, kids throwing balls, girls taking SnapChats with their friends, laughter, yells. There was nowhere quiet to go. I put a pill in my mouth and chewed it, hoping it would seep under my tongue and enter my blood system fast. Dan came to me, pulling off my coat since I had lost control of my torso. I always overheat when there’s seizure activity, so it’s important for me to get cool as soon as possible. He gently rocked me down to the ground, supporting my neck. He then ran to get water, and ice, and a few people started to ask if we needed the trainer, or a medical professional. I was able to tell them it was nothing to worry about, that I’m epileptic, and will be fine in a minute. A big fear of mine is being put in an ambulance, and being placed in the hospital, but we were able to avoid that issue. I don’t know what I would have done without Dan. As…

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Post Seizure Update

I’m back! I took a hiatus, had to get back on my feet. The seizure was a doozy, although, it wasn’t a grand mal so I’m grateful for that. It all went down because I borrowed my mom’s carpet shampooer, and I used her noxious cleaner. (Our house is normally a low chemical zone – I’m a baking soda, vinegar, organic, kinda girl.) A few minutes into the cleaning, I started getting lightheaded. I didn’t realize in that moment that I was already in the seizure. Somehow I grabbed my medicine, and a phone, even though I don’t recall making a point to do so. I wandered out to get fresh air, I felt like I was shuffling through a chemical cloud. The smell of the cleaner was so overwhelming that my brain felt like it was choking. I went to a semi-shaded area of the yard, and although it took a long time of staring at the phone, not understanding how to work it, I was eventually able to hit redial which was my parent’s work number. At that point, of progression, all I could say was, “It’s happening! It’s happening! Get Dan. Get Dan.” I was unable to hang up the phone, and could hear them scrambling to find their cell phones. I could hear their panic, their dialog. Then I heard the dead dial tone beeping. I remember closing my eyes, and for the first time during a seizure, I started praying. I prayed to the rhythm of the beeping. “Thank you for my life. Thank you for my life. Thank you for my life. Thank you for my life.” All in all, it wasn’t a short episode, but by the time I realized that it was okay to relinquish control, that I was fooling myself by…

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A Message From Dan

Hello everyone, this is Dan. Earlier this afternoon Jess had a seizure. It was different then her normal seizures as it came on with no aura or preceding affects. She attempted to call me but was unable to use the phone until things had passed and luckily I was not too far away and got home quick to find her laying, unable to move, in the yard. She has been going non stop for the last few weeks and I feel this has put a strain on her. She always wants to answer every text, email, comment, and no human could possibly withstand that pressure. She is slowly getting better as we speak from napping, but needs to rest as much as possible. So, with that said, I am instituting a technological blackout. Most of you will remember me doing this in the past, but in case there is someone newer or does not remember, Jess will be refraining from blogging, texting, calling, emailing until she is feeling better. Or until she sneaks behind my back to do it anyway:). Jess wanted to make sure I wrote something so everyone would understand why she is not returning your messages. We have a good friend in town tomorrow, all the way from Texas, to cheer on the Seahawks vs Cowboys preseason game, and knowing her, I can’t stop her from attending if I tried – however, it’s imperative that she get as much rest between now and then. She’s heartbroken that her running steak of no seizures has to start over, and scared that this seizure came with no aura, no forewarning. She thanks you for your patience, and is embarrassed to have to explain this situation. Thank you for your cooperation, and if you want to send her well wishes,…

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