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!



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, effectively stopped the requirement of Phase 3 trials for AIDS cocktails, getting the drugs to patients immediately.

Nothing will change until we take our frustration, our fear, and anger, and start being heard. We need the equivalent of the Day of Desperation.

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.

How to get into the Duke Polio Virus immunotherapy trial for GBM

Hey Friends,

I received an email this morning from Life Extension (the supplement company) with details about Duke's re-engenineered polio virus immunotherapy that is having amazing results. There are whispers of cures, and miracles. It's not something that's applicable for me in my stage of cancer, but I'm here to help you get the information to see if perhaps it can help you survive. There is even a phone number for a direct call to be evaluated for inclusion in the trial. I hope this works for people. Good luck! Fight on my friends. Look outside the box, ask questions, know your needs, and keep your eyes open. 

Enjoy!

Jess

Duke Polio Trial for Glioblastoma

In 2013, Life Extension® announced a discovery that added precious years to people stricken with a lethal brain cancer called glioblastoma. The drug shown effective was valganciclovir, which is typically prescribed to treat cytomegalovirus. 

In 2015, CBS News 60 Minutes featured a story about research emanating from Duke University Medical Center showing complete responses in terminal glioblastoma patients who were administered a re-engineered polio virus directly into their brain tumor. The re-engineered virus prompted a powerful immune response against the viral-infected cancer cells that in some patients appear to eradicate their glioblastoma. 

The Magnitude of Human Carnage 

Each month, 1,000 Americans die from glioblastoma. Up until now there was no cure. Survival from time of glioblastoma diagnosis averages only 15 months. 

Valganciclovir extended survival to over four years in some studies. Doctors are cautiously optimistic that this re-engineered polio virus may be curative. 

How to Enroll in Duke University Study

If you or someone you know suffers from glioblastoma, here is the patient criteria needed to participate in this Phase I clinical study: 

1. You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment). 

1. You can only have 1 area of tumor. 

1. You must be fully functional, that means totally coherent and be able to walk and do things on your own. 

If you said yes to all 3, call and speak to Brittany at 919-684-5301and press option 1. Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial. 

Questions Life Extension Asked Duke University

Question: How many glioblastoma patients is Duke accepting? 

Answer: There are no limits at this point. People have to qualify after they provide us with their medical histories and complete all the paperwork. If accepted, they then meet the nurses and doctors for their appointments. 

Question: How long is the wait to begin treatment? 

Answer: Treatment starts after the patient meets all the appointments and completes the screening. Patients start treatment as soon as everything is in order. 

Question: Are younger people given preferential treatment? 

Answer: No. 

Question: How many people are not getting treatment because of the favorable 60 Minutes report? 

Answer: No one is rejected. We have had a lot of calls, but have been able to handle them. The pre-screening questions help to eliminate wasting time so we can continue the screening process and see if people qualify for the study after all the preliminary work is done. That is based on them meeting their appointment times, sending in the paperwork and meeting all the other necessary criteria, etc. 

We Applaud Duke University…
But More Lives May Have Been Saved 

It appears this re-engineered polio virus therapy could have been introduced sooner had it not been for bureaucratic hurdles regarding human clinical research that Congress has to fix. Glioblastoma is considered virtually 100% terminal and no human should be denied access to an experimental therapy that has a credible chance of working. 

View the 60 Minutes segment about this new treatment for glioblastoma.

To inquire about qualifying for this Duke University study, call Brittany at 919-684-5301 and press option 1. If you meet eligibility criteria, Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial.

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.”

"While the initial tumors and most of the recurrent tumors in our cohort had 0.2-4.5 mutations per megabase (Mb) (21, 22), six of the ten patients treated with TMZ had recurrent tumors that were hypermutated; that is, they harbored 31.9-90.9 mutations per Mb (table S6).”

"The introduction of thousands of de novo mutations may drive the evolution of TMZ-resistant glioma cells to higher states of malignant potential (1, 23). Indeed, all six recurrent tumors that showed evidence of TMZ-induced hypermutation underwent malignant progression to GBM, a high-grade tumor with a worse prognosis (8, 9).”

"We also demonstrated an alternative evolutionary path of low-grade glioma that is largely determined by adjuvant chemotherapy with TMZ.”

“Mutation rates in each tumor pair suggested that >98.7% are due to TMZ-induced mutagenesis (10).”

"There is currently no information on whether treatment of grade II astrocytomas with TMZ confers longer overall survival (8)."

"Future basic and clinical studies must weigh the initial antitumor effects of TMZ against the potential risk of inducing new driver mutations and malignant progression.”

What I see, that is lacking in our medical system, is a complete disconnect between current research and general practice. I’d like to think that doctors want us to survive, that they prescribe treatments to prolong our lives, but the fact remains that the current system is antiquated, and dangerous. It’s dangerous because there is tons of research being done, but doctors are not aware of the changes, and new developments. When a study like this comes out, every nerco-oncologist in the world should be aware, and changes in treatment recommendations should be adjusted accordingly. People are dying because of this lack of knowledge. It’s unacceptable. 

We are not receiving “best practice” we are receiving “marginal, outdated practice”. I recognize that doctors are busy, that they have massive workloads, and we can’t expect them to be up on all the latest research (or can we) but this is our lives, we need the most cutting edge information. It is my opinion that before neuro-oncologists prescribe TMZ alone (or even in combination with radiation) low grade patients should be apprised of the serious risks of taking TMZ. That using it alone (on low grade glioma specifically) has shown a 60% chance of causing a recurrence that will present as a GBM. That is a horrendous risk. It’s well known that brain tumors recur and recur and recur until it progresses to the point where it kills you, but usually with low grades (left untreated by TMZ or radiation) it most often recurs as the same low grade. At least for the first few tumor recurrences. Living a life with a glioma is a chess game. It’s always a guessing game about when to treat and what treatment to use. You don’t want to “poke the beast” with the wrong treatments, yet you often aren’t comfortable with the standard wait and watch protocol. 

It is imperative that patients know the dangers of TMZ with low grade glioma so that they can make educated decisions. That’s why I’m writing this blog post. I hope it helps spread the word that treatment with TMZ for low grade glioma has inherent danger.

Want to know what my buddy Stephen from Astrocytoma Options says? 

"As the hypermutation phenotype has been seen in some grade II astrocytomas and also in glioblastoma (14) following TMZ therapy, by extrapolation it is likely that it also occurs in grade III astrocytoma patients. The frequency of this occurrence will not be known until larger studies are completed. This new knowledge should have immediate impacts on chemotherapeutic strategies, especially for lower grade glioma." 

One of the many things I appreciate about Astrocytoma Options is that Stephen has a way of digesting information and using it to our advantage. What I'm saying in this blog post, is not that we should throw out TMZ, but that we need to better understand it's benefits and downfalls. It may still be a benefit in a cocktail approach, but needs to chosen with care. 

"If a decision is made to proceed with TMZ chemotherapy for lower grade (II and III) glioma patients in the adjuvant setting (post-radiation) or in the absence of radiation, one strategy to reduce the risk of TMZ-induced hypermutation could be to apply a combination strategy, involving a simultaneous or alternating application of other cytotoxic drugs, which reduce the evolutionary selective pressure exerted by TMZ alone."

I hope this information lives on in the interwebs, the information must get out, and it seems as if we have to change the way we are treated, literally, by informing our oncologists.

Confidence is Not Cocky

Do you ever do exactly what you want, when you want to do it? To be free? I just left my dirty house, with my unpacked suitcase for NYC, and hopped on my bike for a jaunt around the neighborhood. I caught the final hour or so of sunshine. It was surprisingly nippy out, a great breeze off the ocean frosted my face. My cruiser and I rode donuts around quiet streets, circle after circle, block after block. I didn't care what people thought, even though technically I was a 30 something acting like a kid. A big old kid, and it felt soft, and comfortable, and safe.

 

I am so nervous about the panel. It's one thing to theoretically be on the Surviving Terminal Cancer premier panel, and a whooooole other thing to literally be on it. I've had all kinds of thoughts, thoughts of how I can represent our family of survivors, thrivers, those in treatment, and the missing. The movie discusses people who have been diagnosed with glioblastoma, and anaplastic astrocytoma. Those are stage 4 and stage 3 respectively. I'm just a lowly infiltrating astrocytoma. Granted, I've been around the block and had my fair share of brain surgeries and treatments, but it's different. I somewhat feel under qualified, then I think, shoot, I'm just their little sister. According to the statistics, I will grow into a stage 3, perhaps even jump to a stage 4. I've always been watching and learning from my older sibling's journeys, seeing how they navigate, how they handle things. I look up to them, the Ben Williams, and Anders Ferry, and Rich Gerber, those who are living far past their diagnoses because they took their health into their own hands. They researched, and combined, and strategically cocktailed their way into longevity. They are rock stars, and inspirations, and in my own way, by going so far outside the box always looking for cutting edge treatments refusing to just lay back and die by the joke that is standard of care for brain cancer, I'm honoring those who have gone their own way.

When I was processing the information of joining the panel, I thought about how I always put myself down. I always belittle the blog. I say things like, "Oh me and my silly blog." But why? Why would I play down my years of heart, and knowledge. It's me. This is who I am. I'm sharing my soul. I started thinking, if I was a man in the same position, doing the same thing, would he/me put down his accomplishments? His blog? I don't think so. I think most likely, an average man would just be matter of fact that he writes a brain tumor blog. He probably wouldn't put himself down. Why do girls and women do that? Why do we downplay who we are, what we've done, or what we do? Once I realized the error of my ways, I started working on no longer belittling myself, or my blog. I'm trying to be authentic, and allow myself to feel good about what I do. To acknowledge that it's okay to be proud of this blog, to be proud of myself, to be proud of what I'm trying to do to help others. In order to do that, I had to recognize that feeling good about what you do is not the same as being cocky. You can be confident, and passionate, and do amazing things while still being humble. They are not mutually exclusive. 

Anyway, I'm kind of rambling, but it was a big moment when I realized that fact. That I can be confident and humble, and I don't have to downplay what I'm doing. Even just writing that out feels strong, and real. I am allowing myself to be proud. Wow. This feels good. And foreign. I don't think that me being on the panel makes me any more important than any other person dealing with a brain tumor, but I hope that with my experiences of traveling for doctors and treatments around the globe, I will inspire others to not settle. That we're worth it. That we can demand excellence. That's what I hope to do, just share what I know, what I've done, and allow others to dream big. This doesn't have to end us.

On a side note, a very wonderful man who has been a family friend (we were driven together through the Oldwyn family business a few decades ago) has donated to cover the expense of filming the panel, and he also connected us with the videographer, so the taping of the panel is a go. (Thank you dad for reaching out!) I will check with him before I out his name, on here, but what a gift!! He may never know the full impact of what he has done, but his donation will live on indefinitely as a recorded piece of information for other cancer people that will come after us. I only hope that the information on the panel will be helpful in other people's journeys. All I want to do is help those who are on the same journey, and those who will come after me, get from A to point Z with less bumps then I've had. Let's band together and combine our knowledge, our connections, our drive, and collectively tell cancer to go kick rocks.

Sunday Dennis Medical Fund

I have never met a Canadian that I didn't like. In fact, all of the Canadians that I know are absolutely superb. I adore them. With that being said (even though, essentially, it's irrelevant), a close friend of my buddy Stephen (Astrocytoma Options) just forwarded me an email. It's a letter from a desperate husband to save his wife, the mother of their three young children, from a newly diagnosed aggressive brain tumor. I realize that many of my readers are fighting their own cancer battles, or they are family members who are the support system, but if you are so inclined, and capable of donating, the information is below (I will copy and paste the letter). There are so many who are fighting their own battles, so of course, there is no pressure here. I just want to spread the word and help out in any way that I can. You guys know how much I advocate going for the best medical care - even if you have to travel. That by driving the demand we support cutting edge treatments that will become more accessible for everyone, and that's a very powerful thing. To support pioneers in treatment is a win for all brain tumor fighters, current and future. So whether you can donate, or just help out by sharing their story (I think there's a way at the bottom of this post to share on other media sites), I appreciate the help very, very much. At the end of the letter is a video of Sunday, the wife and mother. She's a singer/songwriter. Let's keep her singing!

We need to get to UCLA

I can hardly believe that I am writing this letter, but I am. It the hardest letter I've ever had to write in my life.  On Wed. Dec 31st, Sunday was diagnosed with a brain tumor.  On Thurs. they sent us to Victoria General Hospital where we met with Neurosurgeon, Dr. Evan Frangou, to talk about removing the tumor.  On Fri., they ran a few more tests, did an MRI and again we met with Dr. Frangou.  He let us know that without a tissue sample there was no definitive answers as to what kind of tumor it is, but based on test results there is a high probability that she has a high grade Gleoma, a fast growing, aggressive form of brain cancer otherwise known as Gleoblastoma.  There are very limited resources in Canada for treating such tumors.  It can be removed, hit with radiation and high levels of chemo, but this is not a cure.  So it's just a matter of time before more tumors grow.

Upon learning about her diagnoses, Sunday contacted our friend Stephen Western, a patient advocate, and an incredible researcher of brain tumors and the advancements of curing these types of cancers.  He has an incredible website http://astrocytomaoptions.com/ with lots of information on these types of tumors and treatments that are being studied.  (Please take a look at his sight and make a donation to help further his research.)  He informed us about a clinical study being done at UCLA under the direction of world renowned neurosurgeon Dr. Linda Liau, M.D., Ph.D., Professor and Vice Chair of Neurosurgery, and Director of UCLA Brain Tumor Program.  This clinical study is on Dendritic Cell Vaccine.  In other words, taking some of Sundays blood and training her DC cells to destroy tumor cells and re-injecting her with that blood whereby eliminating all Glioblastoma cells. This study is being done at the UCLA Department of Neurosurgery and David Geffen School of Medicine at UCLA.  Using this technology, they have been finding incredible results killing all Glioblastoma cells having no tumors return.

To qualify for this study the protocol requires us to have the tumor removed by Dr. Liau at the UCLA Medical Center.  We have to pay for this part ourselves, then every other cost is covered by the clinical study.

This is why I am writing the letter.  I am asking for everyone and anyones help to get us to UCLA.  We need to raise funds to help pay for the cost of surgery, anesthesiologist, pre and post op care and hospital fees.  Right now our goal is to raise $300,000 by the end of this weekend.  Everything is happening so quickly so I am waiting to get a estimate from Dr. Liau but I believe this will help cover most cost if not all of a procedure of this magnitude.  Because of the kind of tumor, the size and the location, we don't have time to waste, we have to act quickly.  If we can have the funds together by Monday, January 5th, we can get ourselves enrolled and down to UCLA by the end of this next week.  If you have money or anyone that you know has money I am asking for substantial donations to be made for Sundays care.  This is my wife's life and the momma or our 3 children, so I am not afraid to ask.  Please help us in any way that you can.

Know that any contributions made will help save Sundays life and contribute to saving hundreds more, as it will help in the advancement of this kind of ground breaking technology, Dendritic Cell Vaccine, Immunotherapy.

All Canadian funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=JP4A94YKEV75C

All US funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=FMPMQW2DX3R5E

Thanks you in advance so so much.

In love and light,

Jason (Sunday, True, Cyrus and Ishan too!)



Here is a link to her four songs if you'd like to hear more of her beautiful voice.

Ethically Ending

How fortuitous is this article? Very fitting considering my most recent post. The article is good, but the video at the end is eye opening, and heart wrenching, and beautiful, and real. These are the things that we must ponder when dealing with cancer. It's a very dangerous topic because people tend to have polarized, strong opinions about ending your own life, even when you're terminally ill. I have a lot of emotions wrapped into the debate, but I'm not hard core on either side. My motto, though, in life tends to be, "Who am I to tell someone else what they should or shouldn't be able to do with their life, and their body."

She's young. She is newly married, and was trying for kids, then boom, life changed in an instant.

I respect her decision. I also don't think I would have the cojones to swallow those pills. But maybe I would. You never know how you would handle a situation, until you're in it.

One thing is for sure, October 30th is now burned into my mind, and my heart. I will be thinking of Brittany, her husband, and her mother for a long time to come, I can tell.

Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He's such a jerk, that Doubt. I'm macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It's going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries.

This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I'm not much for camping; I'm a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I'm alive, that I'm out there living.

Where did the girls go!?

Dan caught us snoozing

Our campfire smoke made it a bit hazy, but what a gorgeous spot!

On another note, I've been meaning to mention that for the first time the FDA has approved a pharmaceutical CBD to treat glioblastoma. (Remember my post on CBD for brain tumors and seizures?) The drug was given "orphan drug status", here's the press release, or you can read it below. This is fantastic validation for CBD advocates! The FDA had already granted "orphan drug status" to the same pharmaceutical company, Insys Therapeutics, for two rare forms of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome). Boy do I love it that I live in a state that makes it easier to procure, and use medical marijuana. Even though CBD isn't psychoactive, you still have to have a license to grow marijuana, even if it's industrial hemp (which still hasn't passed in the House). We're getting closer, though, to allowing us cancer fighters to do what we have to do to survive. This is our life, our future, our bodies. Ultimately, we should be the ones making the decisions, not the government. We're a unique crew, and should have flexibility, even carte blanche.

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

New Friend

While waiting for Dr Liau we met a new friend. Kelly is fighting a glioblastoma, and has been fighting it for the past two years. She is a total warrior!!

Appointment went great! Will update later. No surgery this week :) We should have the appointment scheduled by the end of the day. So much to report, but the WiFi at the hospital is horrible.

Dr Linda Liau is a complete rockstar.

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.

Big D Turns 34

Dan tuned 34 on Saturday, and above are the remnants from the celebration. It's fun having sweets around the house, they're so pretty! Baked goods are so feminine. They make me infinitely happy. I thought I'd be all over them like a little bunny on carrots, and that I'd have to throw them away, but oddly, after sharing two cupcakes on Saturday, I had my fill. Now, I'm sending Dan to work each day with goodies for the other boys. I used to bake all the time, but stopped when I got the big C. Ever since I learned that sugar literally kills, I've cut back in a big way. It's awesome having the cupcakes and brownies around the house because it makes me feel warm, that our home is cozy and inviting. There's something about baking that just feels right, even when I've read that it's so wrong.

Things are good over here. Like I've mentioned before, we've been more relaxed about my diet which has been a lot less stressful. I'm very curious to find out at the next MRI if the high doses of artemether & sulforaphane cancel out my relaxed diet and still shrink old Hermie. It's all such an ebb and flow, there's never definitive answers until each MRI. We're walking in uncharted territory for the most part. I'm of the mindset that if Hermie grows, it will be because of my lax restrictions of sugar (sweets, wine, carbs, or things of that nature).

We were incredibly hard core from October until January. It was precise, and calculated. I can only function like that for a short while. I have to be bad, and live like a normal human from time to time. Anyway, we'll find out if I've been enjoying myself too much in about six weeks. It used to unnerve me, drive me nuts, always worrying about my choices, but luckily, with this type of brain cancer I have a lot of leeway compared to the further stages. According to the World Health Organization, "Individuals with grade 4 astrocytoma have a median survival time of 17 weeks without treatment." Jeez. Seventeen weeks is just past four months. Death? Yikes. If I was in that situation I wouldn't even play around with cheating on my diet, but since I'm not, I'm living my life allowing some happy foods, not just eating for health, but also happiness. It has taken me a bit to relax, and I might find on April 19th that it was a mistake, but hey, if I don't try it I'll never know.

I feel confident that I can cure my brain cancer, even though it isn't often accomplished. I probably sound crazy to some, maybe even to most, but just because others have heart breakingly failed, at no fault of their own I might add, doesn't mean that I will. And when I do beat this, I will find a way to dedicate my life to help others survive.

Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.

Off The Artemix

Photo Of The Day: Sleepy Kitty - Mr. Bingie Butterbutt

I stopped taking the artemisinin last night. Phew, that's going to make life easier. It has been serious dedication to stop eating at 4:30 pm each night. There are still a few pills left in the bottle, but we stopped because there were a few signs that perhaps my liver and kidneys were getting tired. I won't get into the details - nothing scary, just a little too much information. For the next few days I'm going to try and flush my system with more of my vegan diet (especially my green smoothies), and lots of water. In a couple more days, when I feel like my body is ready, I'm going to start the high dosage of artemether. Our goal is to do a 1-2 punch on the cancer cells and see what happens. I should only be on the high dosages for 3-5 days, we're going to feel it out. After that it's smooth sailing until the MRI on January 13th.

I'm excited and nervous about the transition. I'm hopeful and excited, but at the same time, sometimes I worry that I haven't done enough. The artemisinin is shockingly non-invasive, and easy to consume, I wonder if it's even working. I try not to think negatively about this treatment, but I'm human. Things just pop in my head from time to time. I'm excited to get the results and find out. Patience is incredibly important, and yet so hard to come by. It probably doesn't help that I read Tug McGraw's book recently, which in its final chapter detailed his death from a glioblastoma which is what my brain tumor progresses into (eventually). Big mistake. I don't think I needed to know all the heartbreaking details. I've been looking to books and videos to uplift me and give me strength. The problem is that some books are just flat out sad. It's tricky stuff.

At least, if this protocol doesn't show up as effective, I still have more tricks up my sleeve. That, my friends, is what I'm so grateful for today. There are always more ways around the same problem! I'm also grateful that I only have the diffuse astrocytoma and not the glioblastoma. I'm so grateful for that!!