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No Model

A couple of months ago a patient told me that I’m a role model, and it completely freaked me out. That is a ton of responsibility. I don’t want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they’re going to die too? That we’re all doomed? That’s how I feel sometimes when tumor friends have recurrences. I don’t want that on my hands. What if I just want to eat crap for a year and see what happens? You can’t do that if you’re a role model. When you’re a role model you’re held to a higher standard; there’s good behaviors that you’re supposed to exhibit. You’re supposed to lead by example. That’s a lot of responsibility, and it’s definitely too much stress. I’m not trying to be perfect, I’m just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn’t be looked up to.  A couple of days ago I removed my favorite Buddhist saying and replaced it with this. I like to think I made it up, but probably not. Last night, a friend helped me see that I am not other people’s stories. That when I help, I don’t have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It’s easier said than done, but it’s a lesson we all have to learn. In…

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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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Cancer Convos: Episode 2 Fertility

I have been dragging my feet a little bit on posting Episode 2 of Cancer Convos with Crush & Coconuts, for two reasons: 1. We recorded the episode 45 minutes after a seizure that really wiped me out, so my drugged up and exhausted state is cringeworthy. 2. It’s a very personal, very raw video that is clearly difficult for me to open up out. As you know I emote, and share in written form – to expose myself in a video is much more intimidating. There’s no way to hide your face, the tone of your voice, the tears. I don’t even remember recording, as I blackout after seizures, usually not remembering anything for at least 24 hours afterward so essentially, I’m watching this new with you. Without further adiau, please enjoy our experiences with fertility as it concerns with cancer. And as always, if you have anything to add, please post comments so that others can learn from your experience. I always love comments on my blog posts, but I imagine the most beneficial place would be on the YouTube channel episode. Thank you for watching! 🙂

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Cancer Convos: Episode 1 #Scanxiety

In September 2014, I went to my premier First Descents program. The experience changed my life, and I came away from the trip with a renewed sense of worth, of confidence, of understanding for other cancer patients of different diagnoses, and best of all some great friends. When you show up for camp, you have about 15 minutes to come up with a camp nickname. The first girl I met was in the airport. Her blue eyes were piercing, she had such depth without even saying a word. It was in her aura. On the ride to the house, she nicknamed me coconuts. She had already been dubbed Crush from when she started her journey with metastatic triple negative breast cancer. We have been friends ever since, and have toyed with the idea of creating some sort of platform to share our ridiculous thoughts/frustrations/experiences. That brings me to today, the first episode on our YouTube channel, Cancer Convos with Crush & Coconuts. It’s a fun thing for us to do together, especially since we live on opposite sides of the country. We hope that over the coming episodes we can lightly touch on some of our stories, and help people navigate their cancers too. Today’s episode is about #scanxiety, and the types of scans we love and hate. We touch on the pros and cons of different playlists, and the importance of third party independent scan reading centers. I hope you guys laugh as much as we did during the filming. I felt a little awkward (Jessica quit fidgeting, and playing with your hair!), but I’ll get better with more practice. If you like the video please subscribe, or share it with friends. Our goal is to empower patients with knowledge. There are all sorts of nuances with cancer, and…

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A Letter to Joe Biden

I just received an email from a brain tumor caregiver about a post he wrote and it is the most eloquent explanation as to why our clinical trial system is failing us as patients. He precisely explains everything I think, and exactly how I feel. It needs no further introduction. If you haven’t seen Surviving Terminal Cancer the documentary, as he references in the letter, please, please click to see it: WATCH THE DOCUMENTARY HERE. And Logan, you are a rockstar! Thank you! Your browser does not support iframes. Patients, people, are dying! Until we find a way (and I’m guilty of not figuring out how of solve this problem) to take control of the system of how we treat brain cancer, we will continue to die at a 99% death rate. I may not be a good organizer, but I am willing to do whatever I can to get the message out. To work for the cause in a meaningful way. There is so much money wasted on things that don’t help us right now, in this moment. I’m sick of wasting money on awareness, on talk. We need to push legislation through to give patients the opportunity to try promising drugs and treatments. We are given no hope, because the things that could help us are tied up in bureaucracy and it will take years even decades to have access. And during that process, many treatments get dropped because they won’t make enough money – not because they don’t have efficacy. I am sharing this Letter to Joe Biden to help spread the word of Logan Lo, about his courageous wife. I don’t know how to do it, but we need to mobilize the brain cancer movement in order to gain traction. The AIDS activism, with ACT UP,…

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Last Chance

What if today was your last chance? That’s the question I ruminated over on the 31st, as I ran a last minute, last chance, half marathon with my buddy Jules. I hadn’t trained, but you guys know me – I’m always up for a challenge, and I’m not great at longterm planning. Jules had come up with an idea, a dare if you will, to run a half marathon every month for 2016. But of course, 12 half marathons in 12 months wasn’t enough, we had to do a pre-half marathon, a literal last minute half marathon on the final day of 2015. My longest run in the past year has been around 3 miles. A half marathon is 13.1 miles. A gross difference. With my track record of race mishaps, this one was no exception. In fact, if I made New Year resolutions, it would be to pay closer attention at races. So, of course Jules and I needed to use the bathroom before we took off for the race, so as others were stretching, jogging in place, and getting ready for the start, we trailed the end of the bathroom line. As the line was halfway through, the race started. By the time we made it out of the stalls, everyone had taken off. So when we started running, we didn’t know which direction to head. My instincts in these races are solid 100% off, knowing that, you can guess that we ran in exactly the opposite direction of the path. By the time we figured out where to go and redirected, we were 15-20 minutes late from the starting gun. It was 21 degrees, and icy in Bellingham, and I hadn’t been running outside at all, but the second my legs started moving, I was bouncing and…

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Merry Christmas Friends!

MRI is scheduled for this Saturday. Guess we'll find out about deez noodles. A video posted by Jessica Oldwyn (@happy_coconuts) on Apr 11, 2016 at 4:18pm PDT Merry Christmas and Happy Holidays! Thank you for helping me survive my cancer diagnosis, for helping me thrive. For picking me up when I don’t have the energy to do this alone. Your support, your laughter, your hugs, and your understanding gives me strength, and a great deal of gratitude. When I was diagnosed and they told me they had nothing to help me get better, it was terrifying. But a day turned into a month into a year into several, and here I am. I’ve successfully completed three brain surgeries and my dream is to never undergo another. We’ve found amazing treatments, and I feel wonderful, and happy, and I thank all of you for helping me navigate this exhausting, wild ride. I’m still scared every single day, but it’s getting better. When doctors expect you to die, you believe them. But in my heart, when I get scared, I remind myself that every single life, and every diagnosis is unique. I am not a statistic, I’m me. Sending all of you big, big love! ❤️❤️❤️

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Bacteria on the Brain Article

Holy cow this is amazing! One of my buddies sent me this article, probably knowing that not only do I love hearing about brain cancer/tumor treatments, but also I am enthralled with bacteria and viruses and how they can relate to cancer growth and treatment. If I ever have to have a fourth brain surgery, I want my brain flap soaked in Enterobacter aerogenes too – and what a surgeon! Dang. A true doctor, and true healer. I love problem solvers. If you have any problems viewing this amazing article please click here: Bacteria on the Brain. Your browser does not support iframes.

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Third Party MRI Results

We have the third opinion MRI report. If you had missed it, we were told by University of Washington that my MRI was stable, dating back for three years. Then, UCLA reviewed my MRI scans and told me that there had been changes in my brain, that the scans were showing recurrence and that I needed to start radiation and enroll in one of their clinical trials. (Click on the above links for the posts.) UCLA did not review my file before looking at my brain scans, they did not look at my treatments before recommending radiation and the clinical trial. Had I not dogged them and asked many, many specific questions, I would be starting unnecessary radiation. I would be enrolled in a clinical trial for a drug that I do not need at this point in time. The treatment that I do, the dendritic cell therapy, causes some inflammation and slight increased FLAIR, but I find it very interesting that two facilities do not find reason for additional conventional treatments when UCLA made me feel like recurrence was a fact. It is so important to ask questions, as many as you can think of. It is important to follow your gut, your intuition. You are in control of your body, and to a certain extent, your fate. Thankfully, my family is stubborn, and we went out on our own to a private facility that reviews MRI scans. They don’t recommend or provide treatment, they only analyze the images and report what they see. It’s wonderful, and worth the money to get an unbiased review. I hope you can read the report, it’s fascinating. It’s definitely the most in depth radiology report I’ve ever received. I feel relieved, and tomorrow I am going to celebrate by running a one…

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Garlic as Antibiotic & Diets

Somedays I dink around on the US National Library of Medicine National Institutes of Health. I don’t always read about cancer stuff, though. Yesterday I found a cool study showing the synergistic effects of honey and garlic in treating common bacteria like Staph, E. coli, and Salmonella. I was researching treatments for my persistent lung infection (remember that fever I was so excited about?). Anyway, I love finding fun new ways to treat myself, or take care of myself. A few weeks ago my lungs started burning – no sore throat though. And the more I did, the worse it got. I tried running out the sickness (not my brightest idea), and waiting it out. I thought about getting antibiotics, but I haven’t taken them since high school. Pharma-antibiotics are amazing, and necessary, but I still like to avoid them at all cost because of the fact that they kill all the good bacteria in your gut, and your gut is not only important for digestion, but it’s responsible for 70% of your immune system. I don’t want to kill all my good bacteria, so I like to use whole food antibiotics like garlic. I probably sound crazy, but there is actual proof that the allicin and DAS in garlic (most effective when minced and set out for 10-15 minutes) is antibiotic. There’s a pretty cool excerpt below, demonstrating some of the proof. There is a link at the bottom to read the study in its entirety. If you head to http://www.ncbi.nlm.nih.gov you can find much more (add words like “garlic”, “xdiallyl sulfide”, “allicin”, “antimicrobial”, etc.). Anyway, I started dosing heavily with garlic, two minced cloves every two hours, along with the juice of a head of garlic, 6 lemons, and 8-10 inches of ginger, and low and behold the infection is going…

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