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radiation

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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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Abbreviated 18f-DOPA PET Results

It’s a long story, and I’m pretty pooped, but here’s a basic overview. The “scan was concerning for active disease”. It really isn’t the biggest deal, it could have quadrupled in size. There’s still questions surrounding imaging possibly being effected by treatments – not likely, but I won’t rule it out, I’m always hopeful. We’re trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I’m surprisingly pleased with the results. It’s not the best news. As our neurosurgeon says, “It’s trending toward recurrence”(there are two “nodules” they’re watching). She wanted surgery, but we asked for a little more time. I’m not ready for the risk. I’m too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination. Apparently even my happy kitty socks couldn’t save the day, but they made me and my TSA pat down lady happy, so there’s that. Sorry that I won’t be letting people know individually, but as you can imagine, it’s overwhelming to reach out to all you lovely friends, I’d be on my phone for hours. I’m hoping to give a better explanation about the situation in the coming days.

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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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TMZ Hypermutation in LGG (Low Grade Glioma)

I’ve been meaning to write about this issue for several months, and apologize for the delay in sharing. I was overwhelmed by the magnitude of the report, and didn’t know how to broach it. This is by far one of the most important research studies I’ve ever read regarding low grade glioma. Finally, some legitimate information which should help patients decide on treatments. I have sent the papers to my tumor friends that I know are considering, or on TMZ, of the hypermutation issue, and now I know that a post has to be written for those out there on the interwebs looking for direction on whether or not to take temozolomide (TMZ) for a low grade glioma. I’m going to embed the research study, along with the supplement, and although I realize not many are interested in reading the entire report (which is actually only three pages of reading), I’m providing a few teasers so that you can either get the gist of it, or it may even entice you into reading the whole thing. Just as an aside, if I know you already took TMZ for your low grade glioma, I did not send the documents to you. I went back and forth on whether I should say something, or not, and I decided it would only be harmful, and scary. If you’ve already taken it, there’s nothing you can do. And ultimately, most likely, if you are a hypermutator, you would have found out with a recurrence during or around treatment.  Mutational Analysis Reveals the Origin and Therapy-Driven Evolution of Recurrent Glioma  (TMZ Hypermutation of grade 2 glioma induced into GBM) “Beyond maximal, safe, surgical resection, there is currently no standard of care for patients with low-grade glioma, and options include surveillance, adjuvant radiation alone, TMZ alone, or radiation and TMZ.”…

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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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Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that’s the story of my life. My mantra should be, “Look again, there’s probably something obvious that will make you feel better.” To preface, I have to explain that I don’t sleep well. Actually, I’m a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it’s worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I’m on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it’s my right leg, and I snap out of bed afraid I’m about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I’ve been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn’t the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I’ve already gone against doctor’s wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I’ve done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I’m the only one who can control the thoughts in my brain. I choose to allow fear in,…

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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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