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Guest Blog Series – Anonymous

It’s the first Friday of the month, and that means GUEST BLOGGER! I am loving reading other people’s perspectives, their feelings, their experiences with their cancer and how it effects their daily life. When I received this article, I immediately started reading it aloud to Dan. We were both floored by her candidness, and her ability to get us chuckling in one minute, then nodding our heads in agreement, then cringing. Her writing is organic and true, and I love it. I’m very grateful to Anonymous and Lone Wolf for participating in the Guest Blog Series.  Jess, the guest column idea looks like a good one. I was completely absorbed by Lone Wolf’s description of her experiences, partly because she writes well but mostly because she writes well about shared experiences. Take the “tell your friends or not” issue. When I was diagnosed, I wanted to keep a low profile but it seemed to be hard for my family and against the advice I was getting from the experts. “Let your friends in,” one writer urged. “Keeping a serious illness under wraps is like trying to keep a beach ball underwater,” another noted. True enough.I ended up writing about my diagnosis and sending installments via email. Of course, once you start that, everybody knows – and they want to know more. Human nature is well-intentioned but it didn’t take me long to cringe at the eventually predictable conversations. Me: “Hey, how’re you doing?” Friend, “No the question is how are YOU doing?” There’s a certain look in the eye. It sets me apart. It makes me feel somehow targeted whether I feel like talking or not. Even whether I know who’s asking or not. Word gets around. Cancer is interesting. A grocery clerk at a local store invariably approaches me when I come in to ask how I’m doing. I…

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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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Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I’ve dodged seizures; I have endured them. They’ve injected shot after shot to boost my immune system, and to fight my tumor. I’ve done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I’ve traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn’t my life. I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn’t belong. It’s confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It’s as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they’re capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I…

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New Blog Page

Hey Guys, I’ve been working on this page for a bit. I’m trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I’m pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don’t have to sift through all of the posts to get pointers. I’ve copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That’s what I’m trying to prevent for others. What to Know About Brain Surgeries This is a list-in-progress of things I’ve learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section): You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.).  You want a neurosurgeon that performs 300+ brain tumor resections a year. You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology.  Don’t be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor’s name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help. After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn’t located in a delicate area of your brain. What is a fMRI? Click for information. If your tumor is located in a tricky area, the doctors may request a partially…

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The Issue of Supplements During Treatment

The information about whether or not to take supplements during treatment is confusing. The vast majority of oncologists say to avoid all supplements, especially anti-oxidants, during treatments, but I think that’s a shortsighted stance. There’s a plethora of research studies showing the benefits (and sometimes the downfalls) of adding a few supplements to your protocol. There are many oncologists that are anti-supplementation, but then there are lots of cancer nutritionists, and other alternative specialists who are pro-supplementaton during treatments. Not knowing who to trust, we often end up avoiding healthy supplements that can act synergistically with our radiation/chemo/etc., or we pick the wrong supplements which can lessen the cancer killing effect of the treatment. But how do we know what to do? Who do we trust? We don’t have the time, or often the brain power, to sift through everything when we’re dealing with a new diagnosis, or the progression of disease. That’s why I was very excited to see that Ben Williams, Ph.D. updated his research on the issue of supplements during cancer treatment. You may recognize Ben Williams, Ph.D. as a glioblastoma fighter who wrote the book, Surviving “Terminal” Cancer. He’s an incredible resource who is very active in the brain tumor world. This guy knows his stuff. His paper is 42 pages, which may seem overwhelming at first, but when dealing with such a complex issue you really do want exhaustive information. This is truly a fabulous resource. You can access the document below, just click. Enjoy. The Role of Supplements (including Anti-Oxidants) in Cancer Treatment By Ben A. Williams

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Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful! I have big news, but I have to start at the beginning……. I’ve been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven’t been sleeping well, and I’m constantly tired. After my most recent IV treatment, Danny and I realized that if we’re going to fight to get healthy, we need to exercise every avenue. And yet, we don’t have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So…….I contacted Dr Germany’s clinic in Duderstadt. I’ve been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia – all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in – incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs. As you can probably read, things changed. There’s nothing wrong with Dr Germany’s clinic, in fact we may still end up heading there, but guess what…..this is huge…..I might be accepted into a clinical trial. Let me tell you about it….. There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it’s important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs,…

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Poor Little Hermie

Jules and I walked the lake last night. I’m so lucky to have all these girls (Erin, Meagan, Meghan & Jules) that take different shifts to help keep me in the game 🙂 Today, I’m headed to a new internist appointment, trying to find a better go-to doctor for all over health. Then, this afternoon, I’m headed for my first high dose IV of vitamin C! Lets hope they can find my vein easily!!! I’m excited and nervous. I’m seriously traversing the metro today…can’t wait for my new adventures. As for the vitamin C, if you try and ingest it, your body excretes most of it, to get the massive levels, you have to get it injected. By injecting it, you bypass the stomach, the lower intestine, and liver, and the vitamin goes directly into your blood stream allowing it to travel all throughout your body. So, the IV helps bioavailability. This whole treatment is amazing. It’s a great addition to any radiation, or chemotherapy. Vitamin C is a molecule off of glucose, which is what cancer and tumors live off. So, the tumors suck up the vitamin C, thinking it’s delicious sugar, but in truth it’s an antioxidant. In the high doses, vitamin C generates large amounts of hydrogen peroxide which is a potent free radical. A normal cell has catalase to neutralize the free radicals and protect them, but cancers DON’T. So, the high levels of vitamin C weaken the cancer cells. Also, the hydrogen peroxide aids in the artemisinin. That’s why I’m supposed to walk for two hours before I take my pills every night, exercise and deep breathing help oxygenate my brain generating more hydrogen peroxide. So, literally, today with my IV, and my walking, and then the artemisinin, poor little Hermie is going to get…

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Beautiful Reciprocation

Thursday was an adventure. I hopped on a bus, then a second bus, and arrived at the Ballard library to take advantage of the free tax help. Free tax help? How wonderful is that! When it came to my turn, I pulled up my chair to speak with Judy. She appeared to be in her sixties, and I noticed that the hair around her ears was white and wispy, yet on the top it was carrot orange. She was very helpful, but at first, she didn’t want to review my receipts for an itemized deduction. She scoffed and said, “Since you’re married, there’s no way you can beat the standard deduction of $11,400.” My face flushed, and I said, “Actually, I have cancer and quite a bit of medical bills.” Instantly her entire demeanor changed, and I realized her orange hair was a wig. She turned to me, with a half smile, and said, “I’m just about to go through my third round of chemo, the coming round is just for insurance – I’m beating it. My sister, who was Harvard educated died of breast cancer at age 34, along with my aunt, and I knew odds were good so I wasn’t exactly surprised.” Here we were working on my taxes, complete strangers, discussing intimate details of her life. She seemed lonesome, brimming with pent up emotion like a bathtub overflowing with water. Judy talked, and talked, and I listened. I understand how much I’ve needed a good listener at times. We never discussed my cancer, or my situation, only my financials. It was refreshing. And, in the end, I felt like I was able to give her something valuable in return for her help. It was a beautiful reciprocation, and I was grateful that life had brought us together….

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Not Mutually Exclusive

Good morning world. I’m feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o’clock hour all week. Danny and I have been hitting the weights pretty hard, keeping up with the running, and it’s causing a delicious exhaustion of my body. It’s a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don’t know exactly how heavy that is, but it felt punishing. I probably sound weird, but it’s thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn’t run or lift weights. At the time when you’re unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, “You just kicked ass!” There’s something about really pushing your limits, and I think it’s okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There’s no shame in that. It’s Monday, so I’m back on my high doses of pills. Today, I thought I’d share exactly the brands that I use, and exactly the what the doses look like. It’s 4 pills from each bottle, taken…

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