Poof.

My friends keep dying.

Smattered between the 50% off holiday spam emails, are updates from caregivers telling me about loss after loss. Then the upside, the lucky ones if you can call us that, they're coming to me with notices of recurrences, and declines, and paralyzations, and sadness. It's surgeries, and radiation, with chemo complaints. It's all heavy. It's always heavy.

So much sadness.

I am not a timely communicator anymore. I've come to dread my phone, and my computer. I hesitate to connect. I'm a conduit for information, this blog, but it's not without an obvious toll.

Thank you for being patient with my lack of responses to emails, to texts, and unfortunately, I don't see an improvement in my behavior, for clear reasons. I don't want to get swallowed by the sadness, so I must protect myself. That means cutting away on many occasions. Or for long periods of time. And it often means everyone, not just cancer related.

I was blindsided by this diagnosis, and have managed because I've methodically taken one step after the other. I have no idea what I'm doing. I'm just doing the best that I can, in the situation I'm in. I have zero capability to disconnect, or compartmentalize. I just don't have that talent. And for a girl lacking in the department, this muddled, cancer vortex, can completely disintegrate the heart at the soul of the girl.

I want to know what's going on with my friends, I want to fix it all, I want the hurt to go away for everyone. But's not fixable. Not by my hands. So, instead, I grieve like they do, and wish things were different.

Just after Christmas, my longest running brain tumor friend passed away. She and I had the same diagnosis. Even a very similar pathology. The difference? The location of the tumor. I had no idea she was dangerously close to death. And that's what it is in my world. One minute they're here, and the next they're gone. Poof. We're a highly vulnerable bunch.

My friend's lives are sifting through the slats of my fingertips.

I don't write much these days because it would be much the same thing. If I write, I feel, and sometimes, the only thing I want to feel is my love for Dan. And I cling to it tightly. He's my safe place, my lair, my battery charger; my blanket, and my umbrella. He's the halls that reverberate my laughter.

To all of you, to those who will read this, and for those who might not, I love you all. I think about everyone often, I pray for people, and send them love from my heart to theirs. I might not call or text much, or respond even, to your messages, but I love you no less. I'm just doing the best that I can.

So I'll have a good cry for M, and then I will wash my face, put on some layers, and walk that last Christmas gift down to the post office for a tardy mail.

I'm not sure when I'll write again. (Thank you for understanding.)

With love,
Jess

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 struggles with epilepsy, exhaustion, the uncertainty of surgeries, treatments like radiation and chemo constantly looming - let alone all of the other off-label, technically experimental, medicines - this housebound woman often feels inadequate, less worthy, low functioning, and non-contributing. I struggle with those emotions on a daily basis. To have someone of authority, like a doctor, give me such a beautiful compliment, it was priceless. I'll bet that doctor has no idea how powerful his words were and continue to be.

This briefcase system is brilliant! I was skeptical at first, but it has truly brought me much more insight, and opportunities. Once you set it up, all you have to do is keep it current. It's also a great spot to put new research, and copies of your med lists, etc. If you have something similar, or if you have any ideas to add to the conversation, please comment below. I am where I am today because of tricks from patients/caregivers. I learned about this concept from others, it had never crossed my mind to put my hard copies in a briefcase. I thought my file system was sufficient. But it wasn't. Having all the documents at hand in appointments, or brainstorming sessions, has been paramount.

Why Reinvent the Wheel? Copy This System!

• Call/fax/go to the medical records department and request copies of every single document (and continue to do so for every additional appointment).
• Buy an accordion briefcase and disk case.
• Create an ongoing timeline of medical appointments. 
• Create an ongoing list of medications. While on those drugs, note side effects, etc.
• Do the same thing for supplements, and various treatments you try.
• Print up new copies of updated documents and bring them to appointments.

I had the opportunity to head to San Francisco, to check out the biotech company, Notable Labs in Dec of 2014. While touring the facility, there happened to be a prominent researcher who studies my type of tumor. I was introduced, and he asked me what type of tumor I had. I responded, "Diffuse astrocytoma, would you be interested in reading my pathology?" His eyes grew wide, and stood to reach the printout. When he saw my mutations, and nuances of the tumor pathology, he asked me if I had ever done chemo. Before I could get the word, "No" across my lips, he boomed, "GOOD." This guy wrote some of the most influential papers in my cancer world, and here he was reviewing my medical decisions. That affirmation, was vindicating, and had I not been carrying my pathology report, I wouldn't have received a free, spur of the moment, evaluation (by the guy who coauthored a paper on hypermutations in LGG). You never know who you're going to run into. Be prepared.

I am forever grateful to those who turned me on to the idea. I hope that their kindness lives on, through me, and helps you.

Half of the MRI Results (Swedish vs UCLA)

Basic update about our current and upcoming results for treatment.

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.

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

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.

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

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, therefore, I can also remove the triggers that instil the fear.

This cancer will be on my terms. I will no longer have that deep rooted fear because I will know that I will only do what I want. I will not be pressured out of fear. I will do standard treatments if that's what feels right. But if it doesn't then I won't. I'll cross that bridge when I get there. This is my life, my one shot. I don't want to regret a thing. And if that means I die young, then that's what it means. Truthfully, if I am going to die young, then it was probably going to happen anyway. But it will be my journey, and I will be true to myself.

Man it's a relief to realize the power I have. But, that power will be diminished if I stray from my heart. We all have our own paths to take, but we also have to blaze alone.

I mean, what is the purpose of this life? Could it be to remain true to yourself? Can that really be summarized in a one-liner? I don't think so. Life is vast, and minute, full of variables, and surprises, and gifts, and challenges. I don't have the answers, but I do know that when I finally fell into a deep sleep, lips upturned in a subtle smile, it was from the rolling thought of, Thank you for this life. Thank you. Thank you. Thank you. Thank you. Thank you.....

This morning, born out of the ashes of my new found strength, I made the most delicious smoothie in the history of Jess smoothies! I even made some smoothie friends.

Matcha Latte
1 tsp ceremonial matcha
warm/hot unsweetened almond milk (enough to fill the cup)

Fill the mug 1/4 full with the warm/hot milk, add the matcha, whisk vigorously. Once it looks nice and creamy, fill the rest of the mug with milk and do a final whisk or two.

Apple Cider Vinegar Aperitif 
1 tbsp ACV (with mother)
filtered room temp water

This one's pretty self explanatory.

Spicy Salty Sweet Green Smoothie
coconut water (add as you blend to the consistency you desire)
1/2 cucumber (with peel)
1/2 jalapeno
1/2 green apple
1/4 lime (skin and all)
1 large handful of spinach
2 leaves lacinato kale
2 inches of ginger (peeled)
2 tbsp fish oil

Blend it all together until it's creamy (it's the fish oil that gives the great consistency, but you can substitute flax seed oil, or coconut oil if you prefer, it may change the taste a little though). This batch fills two glasses.

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

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.

Scalpel, Skin, Saw, Skull

I've been mentally running around like a crazy person trying to plan this trip to UCLA. I have six different appointments already scheduled. I just got off the phone a little bit ago where the gentleman said that they won't schedule my post surgery pathology appointment because they will need to review the results and decide if they're going to recommend further treatment, like chemotherapy or radiation. Once they have their recommendation (hopefully NOTHING), they will decide if I need an appointment with Dr Liau or a specialist. Fingers crossed for just Dr Liau! Of course, I can always opt out of those treatments, but it's still a scary concept to acknowledge that the DNA of my tumor could have morphed into a higher grade. That's a very scary thought, one that only swims around the periphery of my mind, a possibility but not my current reality. It's important for me to not get caught up in the "what ifs." And anyway, I feel great! So there.

Can you believe I'm doing another brain surgery? It's almost exactly 2.5 years after the first one. That seems very quick, and yet, an entire lifetime. They're going to cut through my beautiful, unknowing, innocent little skull. They will use scalpels, a saw, and other tools. They will peal back my skin, pull off a portion of my skull. They will cut small nerves. They will dig around, separating the brain tissue and tumor. They will do all kinds of things, moving and removing things in the most intimate part of my body. They will be working on the area where my most inner thoughts and feelings, my genius and my ignorance are dancing. I speak of a brain surgery the way that most people discuss their grocery list, but here I am, getting quite serious. I guess it's time. After the last brain surgery, I never wanted to have to do another one ever again - and yet here I am CHOOSING do it. Crazy stuff.

I feel better than I have even from before the surgery, before the diagnosis. I hope that I don't have a major regression from the surgery, any type of set back - like death, or blood clot like last time - because I'm feeling fantastic, incredibly healthy, superhuman even :) I'm just so grateful for this opportunity, yet afraid as well. I mean, seriously, they're venturing into my brain. Yes. It's a big deal. I guess we'll just have to wait and see what happens. Gotta take risks in life in order to have success, and I do believe that this is an educated risk that very well might be the biggest success of my life. Why not believe that I can beat this? Why not believe that we can beat anything?

One of my favorite trees along Green Lake. I'm soaking up all of the beauty around the neighborhood, storing the images in my memory bank to fill me up while I'm gone in LA.

I love the flower memorial that has been continuously updated since they chopped down this sick tree along the lake. However, I'm quite confused because they're killing flowers in the process to recognize the death of the tree, doesn't that seem hilariously ironic?

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!

Building Confidence

This is the view from the house we rented in Kauai. The trip was fantastic, hilarious, refreshing, and unbelievably memorable. But, now I'm back, and I need to figure out what I'm going to do next. Sometimes it feels impossible to sift through the different random treatments (high dose IV vitamin C, IV curcumin, hypertermia, oxygen therapy, dendritic cell therapy - need to see if UW has stored tissue from my tumor, etc.), and it's overwhelming to evaluate clinics to make sure that they're full of honest, trustworthy people. Cancer is a billion dollar a year monster, and there are many a snake oil salesmen. At times, I feel like I'm spinning in circles, engulfed by people with all of the newest cancer cures, telling me to drink $32 dollar per 36 ounce salt water that has been ionized (or something like that), drink 6 ounces four times a day and I should be cured within 6-9 months. Seriously, a guy told me to do that. He didn't even know the type of tumor I'm fighting. I'd bet that most people honestly want to help, but still, it's just too much information. I can understand why people decide to just do the standard of care.

Just as a side note, at the appointment with the radiologist on Thursday, when we went to thank him, the guy said, "No problem. I'll gladly help my colleagues to clarify and aide further treatment." So, at that appointment, Dr F (the radiologist) had an agenda to get me on board to do radiation. His job was to convince me. I feel like I can't trust these people. He also said that the other radiologists haven't been accurately reading my last few MRI scans. What the hell?!? Who do I speak to about that? I have to pay these fools. Do they know that they're playing with my life? This isn't a salad recipe, you can't just do whatever you want. This is more like a souffle - I could completely implode. Do they have no humanity? Or - is Dr F just saying that to get me on board? Who do I believe? And if they have been half-assing my reports, I think I should get a refund! I pay these people just under a couple of thousand dollars a year. I just received a bill, so I know what I pay out of pocket. After insurance, a reading of my MRI is $438. Now, I get four of those a year....so.....that's a lot of dough. And that's just the bill for the radiology reading.

My doctors sure are pulling out all of the stops to get me under radiation beams - even though for my specific tumor it will not extend my life. I've been confused about the whole agenda. It has never made sense, until yesterday while I was researching alternative options. I then confirmed with my mother, and radiation, depending on the type (whole brain, gamma knife, beam, how many beams, how many weeks, etc.) is between $200,000 - $400,000. The co-pay is $20,000-$40,000. Are you kidding me?!?!? If I'm going to spend $20,000-$40,000, I'm going to spend it on treatments that will give me more time. It's ridiculous.

I still don't understand what's happening with my artemisinin treatment. I can't seem to figure out why the two smaller areas are shrinking, yet Hermie grows. There is a chance that the artemisinin is shrinking the tumor in the way that it grew out, reversing it back to the beginning, but it's scary to risk my life on the unknown. Danny and I have gone over and over, trying to figure out what we're going to do. There are some pretty amazing clinics in Germany, and a couple in Mexico. But, it's a huge commitment to research these clinics, and it's scary. It's a big leap. But, as a friend said, "Time is life." So, instead of continuing the low doses, we've decided to start the chemo drink. My friends who eradicated their tumor, used the chemo drink, ingesting it every evening for about a year and a half, then they switched to the artemisinin. At which point most of the tumor was gone.

The drink is incredibly labor intensive. It takes about three hours to create, you have to blend things together, then cook it at 100 degrees perfectly for a long time. It's going to be incredibly tough, but it's worth a shot. This isn't something I wanted to have to do, but I have to take major steps. I can feel the tumor in my brain growing. Even Danny has been continuously noticing my deficits. I've become more frustrated too, while trying to communicate. It reminds us of when I was trying to get better after the surgeries. The worst is when I'm incredibly exhausted. I've started stuttering some, and I can feel a disconnect between my thoughts and my mouth. There's an odd delay. I'm sure that others wouldn't notice the difference since they're not around me day and night, but it's something that Dan and I notice, and we're both scared.

I feel like I need to take drastic measures to stop the growth before I start to lose my reasoning skills. I don't want to have to step aside in my active roll of care.

For now, I'm sorry for the lack of email responses, or contact with friends, but I'm completely overwhelmed. I have a serious job to do and social stuff is going to be put on hold. Thank you understanding and sending the love, support, and the prayers - I appreciate it so much, and I truly need it. After Thursday's appointment with the radiologist, my sleep has been full of fitful bouts of jactitation (learned that while reading the dictionary with Katie Jarman). I wake up in the middle of the night with my heart racing, my body breaking out in cold sweats, even in Hawaii. Last night was the first time I finally calmed myself down, and managed to slow my fear. There had been a visceral reaction to the radiologist's dictation about my scans. It filled me with fear, and for the first time, I truly realized that I might actually die. I knew that this brain cancer could kill me, but I had never absorbed the concept. I now, truly understand and it's a horrible, horrible feeling. I don't think I was in denial, I think I was just hopeful and optimistic. Now, I struggle to keep positive. Last night, laying in bed, all I could to was continue my mantra, "I'm healthy and I am strong." But, I'm definitely trying to convince myself, and build my confidence, and I'll tell you what, it's incredibly hard. This is scary.

Goin' for "Stable"

In the picture below, you'll notice more of Larry's fresh garlic. It's delicious, but my breath is ATROCIOUS. Luckily it's just Emma and I today, and bad breath is her favorite.

This morning, I woke up rested. I had the chance to debrief with Meghan over the phone last night. We laughed, and I cried a little bit, told her my fears, and if I heard correctly, I think she might have dropped a tear or two as well.

All in all, I feel like this is going to work; the low doses make me feel so good. Also, this protocol is great - absolutely doable. I enjoy having my last meal at 4:30 pm, then cleansing my body with only water until pill time at 8:30 pm. It takes a serious amount of discipline, but I enjoy the challenge. Oddly, it makes me feel strong. I like routine, things that I can count on. I like knowing that antioxidants are for breakfast and lunch, that every day is the same. There's no guessing, no worries, just the basics, every single day.

I'm scared to see growth, albeit minimal. I worry that somehow I won't beat this. I fear that I will continuously decline, and that this tumor will invade and take over my brain until I am no longer functioning. Those are my fears. And, if I look at the majority of cases, it's exactly what happens. BUT, I have stopped Herman's growth before, so I know that I can do this. I know that it can happen. AND, we did shrink the other areas of tumor. SO, who knows. We just have to stop Herman's growth. I'm happy - not thrilled, like I probably should be - that the other areas are smaller, but as long as Herman is growing, he's a major threat and that rains on my parade.

Herman needs to be taken seriously; he's a formidable adversary. So, here we go again, another three month period to conquer this challenge. Herman feels angry, like I've been trying to keep him down, and he's pissed. I just have to keep the low doses of artemisinin coming each night, tucking little Hermie to bed with my own version of a bedtime story.

It's weird to live like this. To be a functioning young-ish adult living with cancer. My life would not be as easy if I would have followed standard of care and done radiation, so I can be grateful for that. I can't imagine all the effects I would be dealing with. Yuck. At the doctor appointment, my mom asked when they would stop pushing for radiation, and the response was: I need to get two more MRIs with minimal growth to be considered "stable." At that point, hypothetically, I would have an entire year of minimal growth which would put the radiation discussion off the table. They would continue to monitor but not push for radiation. So there you go, that's our next goal. We not only want to stop growth, and have it shrink, we want the doctors to stop pushing radiation.

But, I'm getting ahead of myself. For now, I just need to go run green lake. My goal today is to jog two laps at once (without stopping), that adds up to be approximately 6 miles. I have never accomplished that feat before, but I need to challenge myself. Hermie and I need to have a run and a long talk. It's going to be wet, but I think Herms has pretty good hearing and can decipher my words through the wind and rain drops. He's already getting pouty. He knows he's in trouble.

Problem Fixed

Success! I received a phone call and my neuro-oncologist will meet with us one hour after the previously scheduled, then cancelled, appointment. I feel guilty for having to be so straight forward and direct. It's frustrating to feel guilty about wanting an appointment with my oncologist. I don't enjoy being forceful. A girlfriend who is also dealing with brain cancer gave me solace though. She said that she's never been bumped by her doctor, that at each MRI review she's met with her doctor - not the doctor's nurse (different hospital). And that she would be upset if she was in my position.

I've been bumped at least three times that I can remember. The most memorable was in October. We met with my radiation oncologist's nurse, she reviewed my MRI and said that the tumor looked great, that she wasn't sure if there was any new growth or not - there was an area of concern, but it could be the positioning of my head during the scan. The nurse said that my oncologist would call the following week with the final results. Unsatisfied, my mom pressed on and said, "Is there any way to meet with the doctor?" That's when we headed over to Harborview's Gamma Knife Center, intent on sitting in my radiation oncologist's office until he would meet with us and answer our questions. It turns out that there was significant growth, and when we met with my radiation oncologist, he wanted me to immediately start radiation, the very next week. If we wouldn't have pressed on, and would have instead gone home after the appointment with the nurse, my family would have gone back to Wenatchee, Danny would have been back to work, and I would have been at home when I received the phone call with the horrible news that they wanted me to start radiation. That's not something you should have to hear over the phone. It was a massive eye opening experience, reminding me that I have to stay on top of my care. I'm lucky to have a team, my husband and family, and there's definitely strength in numbers. Follow your gut, and don't be afraid to voice concerns. It's sad that you have to stand up for yourself, but it's the medical world that world we live in. 

Either the University of Washington's neuro-oncology department is understaffed, overwhelmed, masters of double billing, are out of touch with their patients and their feelings or maybe they just don't take cancer very seriously (which I doubt). Maybe it's a little bit of all of the above. Oh well. It must be irritating for some of the nurses and doctors, I don't believe that they're heartless, but there's a bottom dollar and currently my hospital has a bad system, that's for sure. 

On another note, here's a new recipe that I made us for dinner!

Dinner

Lacino Kale Salad
10 large kale leaves, thickly shredded
1 cherry pepper finely diced (you can chop a few of the seed to add some spice)
pine nuts to taste
romano sheep cheese to taste (I zested ours, but you could grate, or it however you want)

Toss the above ingredients (except for the cheese) with a mix of olive and sesame oil, the juice of one squeezed lime, and fresh cracked pepper. Dish up, and zest some romano on top.

On a side note, has anyone else ever noticed that lacino always has a bunch of little bugs in it. They're like little aphids or something. I wash each leaf by hand, pulling the little bugs off, but it's gross. I don't think I can continue to eat it. Any suggestions before I complete give up?