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glioma

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We All Need A Wizard

Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they’re trying to gain the biggest viewing potential, and that potential could help people. It’s all about pulling people in, about shock value. It’s the world we live in. I just don’t believe I’m in my last days. I don’t describe myself as terminal, although that’s exactly what I’ve been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don’t know what our life has in store, for example, when we will die. So, anyway, the production company set us up with a public relations agency that’s helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard – one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what…

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Brain Tumor Movie: Volunteers

Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren’t familiar you’ll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com) In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They’re also looking for “survivors” (I’m so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction. Your browser does not support iframes. I’m not going to apply, I’m already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I’ve been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I’m not cut out to handle all of this sadness, all of this stress. It’s caused me to emotionally eat, I’ve gained weight, I’m not focusing on what’s best for my body – barely exercising. There’s too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don’t come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they’re in the midst of a recurrence. They’re terrified, and confused. I handle around…

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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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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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Pregnancy and Glioma Don’t Mix

I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn’t that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable. When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn’t a given, that it would cause me a third tumor, so we could risk it, but it’s so scary! It’s gambling with my life, I feel like our dream is crushed. So over the past two months – since we researched – we’ve been absorbing the information, and essentially I’ve been in a state of grieving. Like I said above, I’m grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it…

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Out of The Shadows

Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can’t I be fearless? Why didn’t I just start talking about it from the beginning? That way there wouldn’t be a buildup. I avoided it because I didn’t want to deal with people’s opinions. I hate bringing up controversial subjects (unless it’s face-to-face where there’s an open dialog), and I hate to be judged – which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors. I’ve been dragging my feet because I don’t know where to start. And there are so many details as to what helped me make my decision. I know that I can’t include them all because it would be exhausting, and verbose, and complicated. I’m nervous because I feel like I’m not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It’s hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There’s a lot of names out there, and they’re not all exactly the same, but they’re pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they’re still getting results. Does it work for everyone? Unfortunately not. But, as a person who…

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Daily Routine Revamp

Thank you friends, for your patience; I finally updated my Daily Routine on the blog! People ask me, quite often, what my supplements are, what I dose, how often, the reasoning, the effects, etc. and it’s such an exhaustive schedule that I’ve been working on this for a few weeks. Maybe even months, it blurs.  In our house we have more supplements than food 🙂 I’ve hesitated about naming labels, and giving all of this information because obviously, I’m not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don’t want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I’ve done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn’t a hobby. This isn’t a business. This is our lives – it’s literally about surviving – and if I can help people, I’m going to do it.Here’s the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that’s why it’s all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don’t take it as a list of what you should personally do (although *wink…

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Medical Marijuana: Friend or Foe

Since I shared out loud, opening myself up to friends and strangers about my diagnosis, I have been inundated with suggestions about adding cannabis to my protocol. Sometimes it’s been under the cloak of privacy, other times it has been aggressively splattered on my old Facebook page. It is a divisive subject with loyal believers of its’ healing properties, conversely others remain afraid of the psychoactive effects, fearful that it deteriorates lives. The first time I ever smoked pot was in high school. I think I was 15. Growing up on San Juan Island, we were taught in our fifth grade drug class that Marijuana grew naturally in our environment. We were taught how to spot it, and that we were to find an adult to remove and destroy it. As a kid, I was fearful of drugs, but marijuana seemed different. I never grew a liking toward it, though I experimented, and throughout the years would still play around every several years with friends. The pot made me unable to do my favorite things, though, like talk a lot, be quick witted, or harness my boundless energy. I still have friends that are regular pot users (which seems like such a lame way to describe it), and they’re great. They’re brilliant, and hilarious, and successful in their careers, but for me, it was like a rolling haze throughout my brain, shutting doors along the hallway of Thought Process. It was a bad fit. With that being said, when people shared anecdotal stories of shrinking tumors, the alleviation of pain, or of enhanced sleep, I listened (or read the emails) with the same skepticism I hold toward anti-seizure medications, or standard of care. I would analyze their words and feel my throat ache with the memory of my old cigarette…

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Cherries Are A Superfood!

I’m home, and although I tried getting back to bed this morning (at Dan’s request) I can’t help it but hit the ground running. My parents will be here in a few hours to spend the night, as they’re flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent’s house. Because – for the first time – I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we’re back on the next ferry off the island so that we can make it home and rest. Isn’t it crazy how everything always bottlenecks? NYC, venom, cherries. Cherry season is my favorite. They’re so delicious! And really fun to eat. I mean, maybe not if you’re really proper, but I’m more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I’m a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which…

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