Half of the MRI Results (Swedish vs UCLA)

Basic update about our current and upcoming results for treatment.

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 have no idea who she is but I know the look and the sound of the voice. The cancer survivor has entered the store. (One of my sort-of friends announced at Market Place in a loud voice, “She’s a cancer survivor.” What gets into these people?) 

I’m doing very well right now but this has been an ordeal. Chemotherapy and radiation are not fun and all of us who go through the treatments know the peculiar fear. What is this stuff doing to me? After-effects aren’t pleasant either, but all of it has been manageable and I feel good about life in general, that is until I get into another conversation with one of our relatives who likes to tell me, “I would never put that poison in my body.” 

So far I am unfairly attacking my poor well-meaning friends/family but unfortunately there is no perfect formula for talking about cancer so I can’t adequately advise people when I would just like them to shut up. Just let me go back to being normal and benign. Try to forget everything I’ve told you. 

I have always been a hypochondriac but I am now beyond belief. Remember Veda in “My Girl?” She was so afflicted that she thought she had prostate cancer. I am just about that bad. Currently I’m certain that I have breast cancer, tongue cancer, and brain cancer but I have not (yet) seen an oncologist about any of these. “Riddled” with cancer as I’ve heard it said. I am tempted to go hunting for symptoms but the Internet is a terrible place to look for information. If you look for fatalities caused by hang nails and acne, you will find them. 

Then, too, sometimes the people who should know better, do not. I went to see a specialist in Bellingham about two weeks into this “journey” (“journey” is as popular as “survivor”) without realizing that she is a heartless witch. I asked for three things, a clear diagnosis, the options for treatment, and some hope. I got the first two but the third wasn’t in her repertoire. Instead of hope she gave me the odds – the odds against survival beyond a couple of years, the odds in favor of recurrence, the odds in favor of the grim reaper coming to call. I was stunned into silence – a rarity for me. 

So…here I am, feeling good, feeling smarter, loving my family and some of my friends more than ever, looking forward to summer, and gaining inspiration from others. Some of them are celebrities. Joan Lunden appeared bald on the covers of magazines, Angelina Jolie has undertaken extremely brave measures to assess in advance any cancer that might be genetically ready to pounce, and Jennifer Griffin, a tv news analyst, diagnosed in 2009, has conquered triple negative breast cancer. These women and many others keep my optimism intact. True for my admiration for Jess too although she resists the pedestal. 

Jennifer Griffin said this: “The problem is we all think we will live forever. Cancer stops you in your tracks and makes you think about how you want to live your life.” And that’s the truth. 


Anonymous

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 lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.

I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)

When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.

I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.

Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:

I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.

I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.

I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.


Here are a few teasers, but please do your own research and decide what you think.

Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/

Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196

Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full

"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62

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 was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

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 awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

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

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, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........

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 quite a beating. It's exciting, and yet somehow I feel a little bad for him. He's done so much for me, allowed me to learn so much, but I guess I can just remember him fondly and take his lessons with me wherever I go. I guess, that's a nice compromise.

Hope all that vitamin C stuff makes sense, I'm in a bit of a hurry. If it's confusing, I can explain more later!

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.

Breakfast Drink
12 Carrots
2 Inches of peeled ginger
2 Inches of the entire diameter of a green cabbage

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 with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Guest Blog

Here is my guest blog, posted on www.suvivorshippartners.com

What does it mean to advocate for yourself?

It means survival.  Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer.  I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science.

According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate.  Sound like fun?  No.  Nope, the outlook is horrible.  Is that acceptable?  No!

If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options.  You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already.

At first, I believed my doctor’s words and thought that there was nothing I could do.  My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want.  They said I should live my life however it makes me happy.  It sounded nice.  I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines.  Yum! But, something didn’t sit right.  It just didn’t make sense that my food choices didn’t matter.  I mean, wait a minute, I had heard that you are what you eat?  If food is fueling my body then it doesn’t make sense to load up on junk.

I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it.  Then, here and there, I kept hearing stories of survivors of brain cancer.  There are only few, but I realized that those few have valuable keys to survival.  That became my new goal, copying survivors.

There is so much that you can do, including supplements, diet, exercise, meditation, clinical trials, etc.  When I came out of my brain surgeries (there were two consecutive) my doctors told my family and me that I have a 1% chance of surviving this cancer.  Scary!  At least it sounded scary, but once I started researching alternative treatments I realized that I can increase my survival by several or tens of percentages.

You can not be afraid to do hard work.  You can not give up (except for once in awhile when you really need some ice cream).  Each cancer is different.  Become an expert on your diagnosis, on the treatments, on the survivors, on the diet, on the mechanisms of cancer cell division, of how the cancer feeds itself, and what the cancer cells are comprised of.  I know it’s a lot and it takes an incredible amount of energy, but that’s what friends and family are for.  Don’t be afraid to delegate.  People want to help you, they want to see you survive.  Everyone loves the underdog!  Yes, you are going to be exhausted, and sometimes you won’t want to go on, but you have to.  You need to.  You must.  You can do it!

You must be your own advocate.  If a treatment doesn’t feel right, or if the risks outweigh the benefits, you don’t have to do it.  For example, my radiation oncologist has been trying to force me into doing radiation, even though he admits that it will not extend my life and that there are very serious short and long term effects.  You are a customer in the medical system.  Your surgeon, your oncologist, your radiation oncologist, each nurse, they all work for you.  I’m not recommending that you give off an attitude because that’s just unnecessary and rude. But keep that in mind while you are in appointments.  You deserve to be treated with kindness and respect.  This is your body, your life, and your survival.

If you want to survive, and I believe that we all have the ability to do so, advocate for yourself.  It’s the biggest challenge you will ever face.  Contrary to common belief, you’re not fighting the medical world, you’re fighting yourself.  Once you stop fighting against your sadness, or disappointment of your illness, you can dust yourself off and decide that you are your own best treatment.

About Jessica Oldwyn

On April 13th, 2010 at age 29, Jessica was diagnosed with a tennis ball sized brain tumor. The classification is an infiltrating/diffuse astrocytoma (a type of glioma) tumor. Within several days she underwent a partially awake craniotomy, with a second emergency brain surgery to follow. This is her life, living with a brain tumor. Visit her website atjessicaoldwyn.blogspot.com

View all posts by Jessica Oldwyn →

Miracle Melatonin

Hello friends! Yesterday I was so exhausted that after my volunteer time at the retirement home, I walked back to the house, stepped into pajamas, and fell into bed. I slept for three hours. I've recently started taking 21 milligrams of melatonin at bedtime. Not only does it help your sleep rhythms, it boosts your immune system (among other things, increasing the number of your natural killer cells) and has been shown in clinical trials to extend the survival time for a multitude of cancers (including gliomas). I'm only going to take melatonin on the days that I'm not doing high doses of artemether or sulforaphane, just to be safe, but I feel like it's a great addition to my cancer fighting cocktail (for the record, I took Monday, Tuesday, and today off of high doses, I hadn't been feeling very well so I figured I'd give my body a break). 

Melatonin cleans your body of free radicals which are necessary for my artemether, so I'm pretty sure that it's a bad idea to take it during high dose times. Other pharmaceutical chemotherapies have been shown to work synergistically with melatonin. It's actually pretty amazing. It's too bad that doctors are scared to include melatonin during chemotherapy, it would increase efficacy and extend survival time. There's several research studies proving it. If you're interested, check it out. There are a few studies in the United States, but most have been conducted in Italy. 

Anyway, since I've started taking melatonin, I'm sleeping better, but I've also been pretty exhausted. I take it as a good sign though. I hadn't been getting enough sleep, and the melatonin is forcing me to sleep more. 

On the walk to the retirement home, I saw this amazing creation. I don't even know what to call it. Someone tied a bunch of red carnations into a type of mobile. It's beautiful, and such a fun surprise. What a cool act of kindness! Someone was really in the Valentine's Day spirit. 

The first daffodils I've seen around the lake!

Craniotomy, Not That Bad

I'm still sitting here playing the waiting game, which has its ups and downs. On the bright side, I get to spend the weekend with family and friends relaxing, and contemplating what a killer life I have (no pun intended). On the down side I just want them to saw open my head and dig this puppy out so that I can start recuperating.

With all the extra time on my hands I decided to start a fun new game...

Craniotomy, Not That Bad

#1. I have a very close friend whose son was born with Congenital Scoliosis. He's now almost four years old. His case is so severe that in the next 6 months to a year he will begin a series of surgeries on his spine that will occur every 6 months until he's around 16 years old. In the initial surgery he will have a rod placed at his spine, and then with every reoccurring surgery they will slightly extend the length of the rod until he's done growing. This poor little blond fella that looks like he fell off the Jerry Maquire movie case has no idea what's in store for him. His process is going to take over a decade just of surgery, let alone all of the other complications. Therefore, Craniotomy, not that bad.

#2. Another friend, Heather, has a daughter (Hayden) who survived a dresser and television falling on her skull. She was taken to the neurosurgery dept at Harborview Medical Center where a team of doctors had to brace her head, and do surgery by braille to locate a pea sized place in the dead center of Hayden's brain to relieve pressure so that she didn't die. Craniotomy, not that bad,

#3. My uncle Michael (not really an uncle, but one of my dad's best friends) shattered his femur in over 50 places back in the 70's in a mid-west snowmobiling accident. To repair his leg they placed him in traction (hooked up to a bunch of pulleys and wires, with screws placed in the bones once the pieces had been reattached) immobilized him in a hospital bed, and had his leg raised for three months while the bones fused. Wanting to be closer to his wife, they placed him in a full body cast and transferred him via hearse for 28 hours to get back to Seattle. Once in Seattle they immobilized him for another full month. Bedridden for four months. Craniotomy, not that bad.

#4. Another of my friends, Kristen, is trying to support her mother as one of her mother's best friends deals with the tragic news of a malignant brain tumor (almost certainly a death sentence, she was told). The woman is beginning to undergo chemotherapy and radiation. They don't know if she'll live. Craniotomy, not that bad.


Thanks to my friends and family for sharing their stories. There are so many situations that are much scarier, more painful, less hopeful, and more physically and emotionally taxing. We're a huge team of people on this Earth and we get through each challenge together.