14 Years Later

 

I was told I would never live this long, that I would be lucky to see 4.5 years. Today, 14 years ago, I was diagnosed with a honker of a brain tumor, and four brain surgeries later, I'm still here.

It's an endless saga of treatments, research, medicine, fear, bloodwork, MRI's, seizures, new opinions, old drugs, new drugs. Living the brain tumor lifestyle, rather than fighting against it, has given me so much more insight into what might be possible.

I remember thinking, "As soon as I get rid of this tumor, I can go back to living a normal life." But somewhere along the way, I realized, I couldn't have both. I couldn't go back to living a life not centric to cancer. That in order to thrive, I had to completely evolve my thinking and actions. 

My health is paramount, my research and ever evolving wellness is a gift that I give myself.

I don't have social media, but I will post updates here, from time to time. Thank you for the love and support. 

I can't believe I'm still alive, playing here on Camp Earth. It's fucking awesome!! 

We All Need A Wizard

Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they're trying to gain the biggest viewing potential, and that potential could help people. It's all about pulling people in, about shock value. It's the world we live in. I just don't believe I'm in my last days. I don't describe myself as terminal, although that's exactly what I've been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don't know what our life has in store, for example, when we will die.

So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.

Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.

Good morning [Wizard]! Sorry for the delay.

I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.

Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.

I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.

Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.

Jess

In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.

I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.

I feel more connected to others every day, and in that, I feel more alive.

From our episode on My Last Days

Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!

Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.

Ha! Makes me laugh every single time.

I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining. 

Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!

Start Now, The Creativity Journal by Kate Neckel

I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

Astroturfing

My brother sent me this 10 minute talk by investigative journalist Sheryl Attkisson and it changed my life, and scared the shit out of me. As a person who avidly researches, this floored me. I understand that information is widely manipulated, but I had no idea that it was this bad. It's terrifying, and disgusting, and it makes sense. I hope you find it as interesting as I did, and half as disheartening. Think again about what you think you know, and who you think you can trust.

"In this eye-opening talk, veteran investigative journalist Sharyl Attkisson shows 

how astroturf, or fake grassroots movements funded by political, corporate, 

or other special interests very effectively manipulate and distort media messages."

So what do you do? How can you protect yourself? How do you know what to believe? How much further can you really get with a discerning mind if there's so much conflict of interest, and little disclosure? Sheryl has some tips at the end to help you analyze distorted media.

This is a major issue for me with research studies. There are drug companies that fund studies, or they donate [endowments] to [medical] schools within colleges. It's blatantly a conflict of interest. Everything is so tainted, so tangled. Where's the truth? How is it that our knowledge base that is our researchers, and scientists are so exploited? You could even go as far as say they're bought. It's getting uglier and uglier, and I don't see how people can wade through the sludge to protect themselves. It's just gross.

Germany Again? Excellent!

I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?

I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.

Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.

I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.

We Are Strong Beyond Measure

I can feel it in my bones; I've turned a new leaf. I am no longer fighting this role I've inherited on Earth, this brain tumor life. I am whole heartedly embracing it. I'm enthralled with the research, the supplements, the current treatments, the treatments down the line. I am happy to eat my veggies, and down fish, flax seed, and coconut oil. I'm thriving on clove after clove of garlic and pill after pill. 

I can't believe medical professionals - educated people - said I wouldn't walk or run or read again after my hematoma. Here I am, I'm thriving. My brain is so happy it wants to kiss me. I just went down to the lake to take a break from all of the cancer research, and my light reading is on quantum physics. And I love it. It makes sense. It excites me, and challenges me, and makes me giddy. Who would have thought? Clearly not the doctors. 

The brain is miraculous, and if you treat it with kindness, feeding it the right foods, exercising it with new stimuli and challenge it, it will sprout new cells, and new connections will be made. I can't believe that I'm one of the lucky ones where my diet and lifestyle and perseverance is working to heal my damaged brain. Depending on the damage, I'm sure it doesn't work for everyone. That's the thing about life, there aren't any guarantees. All you can do is give it your best shot. And never give up. And when miracles happen along the way, whether they may be small or large, celebrate your fortune.

It has taken 4.5 years to recover from the hematoma and hardening of my duramater. It almost killed me, but it didn't. Some people like to say, "What doesn't kill you makes you stronger." I hate that saying. I think I was always this strong, just as strong as I needed to be to get to where I am today. I didn't need a disaster, a diagnosis, to make me into a new person. It was always in me. I think that's true with all people. Some may just need to dig a little, but it's there. We're all infinitely capable. We're strong beyond measure. We just have to believe in ourselves. 

Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

Lifting By The Roots

Alright, I've been thinking since yesterday's post, that life IS better with hair. (Maybe not easier, but definitely better.) Long hair. Hair I would want. Not hair I settle for, not odd lengths, and weird styles trying to disguise my infinite scar. Real hair with a style that makes me feel like the person facing me in the mirror looks me in the eyes, and smiles. She's been smiling at me for years, my whole life in fact, but since 2010 her smiles were more of sadness, of tender concern. They were never complimentary smiles, not confidence building. I would lower my gaze and walk away, loving her, but knowing I needed a break from the friendship. Her gaze was too hurtful, too knowing. So I pulled away from her, turned my back. These days, though, I peek out at her as I walk by windows, and I know she sees me. I know she knows I'm sorry. Thankfully, she is forgiving, and we rebuild our relationship glance by glance, nod by nod, smile by smile.

Our baby cucumbers are beginning to hatch. This is the first successful attempt at starting seeds in eggshells. I'm embarrassed to tell you that the first batch from a few weeks ago was a disaster - I failed to rinse the eggshells before adding the soil. Within three-ish days there was quite the funk wafting around the house. I had no idea what was causing it, so I wandered around sniffing, and the closer I got to my baby seedlings the stronger the stench. I had to throw the whole thing into our compost. Oopsie. Rinsing the eggshells is a crucial step, good to know. Guaranteed I will never again forget to rinse the eggshells. Never.

In the spirit of green things, and vegetables, I need to share with you a major advance in tumor diet differentiation. What I mean is that there are very different needs between brain tumor groups. For example, tumors that take up contrast on MRI scans (usually stage III & IV) are using mainly glucose as food. For people like me, low grade tumors, according to newer research, our tumors mainly feed on glutamate. This is a big deal. Most research about diet is with high grades, so a lot of lower grade tumor fighters copy that research hoping it will also apply to them. (For example, the restricted ketogenic diet.) But that seems to be very misguided. Glutamate is an amino acid found in all protein containing foods (including grains). As you can see, the restricted ketogenic diet which focuses on heavy amounts of fat (often derived from dairy and/or coconut oil), moderate protein (limiting glutamate), and low/no carbohydrate (restricting glucose), could be the wrong choice for those with low grade tumors. Or is it? I don't know. I'm in the process of trying to figure out how to modify my diet and lifestyle to be healthy and happy, and not provide excess food to Herman, but it's confusing. I now have to read up on the difference between glutamate, glutamine, and the foods that can convert into them; how they convert; what foods are safe. It's a whole new avenue. A good side note is that I shouldn't feel guilty about my love affair with vegetables - they seem to look safe. Or are they? I don't know. It is going to be a serious switch. I already feel very divided, torn, confused. It's hard to oscillate so quickly, and deviate so far from what you considered a lifestyle. Carbs were bad. Carbs were feeding Herman. Now it's the protein. Eeek. It's as if I'm jumping religions; Bhuddism, Christianity, etc. These diets become my belief system on food, on nourishment, on survival. Changing it spins your world, lifting you by the roots. I feel like a little plant in a terrible wind. Will it ever subside? Will I ever find a safe nook to just grow?

Obviously, research is constantly advancing. At the same time we find old research that tells part of the story, then we piece things together, and it never ends. Each time we think we have a stable, solid plan, we find more information, giving us new directions to explore. You can't take much time off of tumor fighting, you'd miss too much. You have to be out there, reading, putting two and two together, connecting the dots. I know I'm constantly referring to my friend Stephen (Astrocytoma Options), but I'm telling you he is an invaluable resource. He always takes the time to answer my questions, he directs me to new research, he is a northern star keeping on course. Recently, he added a spot on the AO website where you can submit your email for notifications and new links every time he adds updates to the website. It's fantastic! It's perfect for brain tumor fighters, we're notorious for being forgetful, or accidentally never following up. We have the best intentions, but we have literal variations of brain damage (depending on the individual). That's how doctors classify us. Brain damaged. It sounds crazy when I say that out loud, but it's true. If you're fighting a brain tumor, or perhaps you're researching for a loved one, you will love the updates. It's like having a specialist in your pocket. Research doesn't get much better than that. Just so you know, since I'm a walking, talking advertisement for AO, I want to stress that it's all my voice, my words, my thoughts. Stephen never knows when I post about him until after the fact. If anything, he's incredibly modest and maybe even embarrassed about how I go on and on about him, but I get so excited to share with you guys. He's such a valuable resource, and I want to spread the word so that you can benefit from his hard work.

Fixing The Chinks

Wake Forrest was such a unique trip. We would never have happened upon the destination, but while we flew over the Rockies, I thought about how different my life would be if I wasn't able to explore the opportunities that pop up in my life. The majority of my success, the ability to jump at cancer fighting treatments, or subsequent programs, lay within the hands of those whom I have loved so dearly, who have supported us emotionally - but above that, financially. I am blessed beyond measure. Dan and I have dedicated our lives to creating our own mini think tank, to include the best doctors for my care. We will fight this scary adversary with support from all angles, and now we're able to include Lindsey, my strategist who will help me understand the medical world, the research, the opportunities for treatments, and I also have the Take The Fight (TTF) resources of Andy, Dineth, Lawson, and so many others who are working toward their undergraduate degrees while literally changing the world of cancer care. It is thrilling!

As a basic recap, Danny and I flew to Winston Salem, North Carolina to meet with a group of students at Wake Forest University (overseen by David Warren who was out of town helping his father fight his glioblastoma). It was for a new program called Take The Fight which will subsequently spread across the country to other universities, and further expand around the globe. It pairs students, one-on-one with cancer fighters. The student uploads all of your medical records onto an online database which is easy to access and modify for those on the TTF team and yourself. You also receive a briefcase of hard copies of everything (even all of your MRIs). Both of these systems (the briefcase and online database) make it easy to continuously research and update your plan, whether it's nutritional choices, supplements, clinical trials, research of the disease or upcoming FDA approved treaments, or whatever you personally need to fight your best fight. Your strategist can also join you in appointments with your doctor which is amazing. While we were at Wake Forest Baptist Hospital meeting with Dr Glenn Lesser a neuro-oncologist, we had two take the fight strategists observing and taking notes. Later, the information from the appointment was uploaded onto my medical drive so that I could access it, and they researched a clinical trial that was mentioned and are following up on some upcoming research that was mentioned. It was amazing! Since I will be doing this program long-distance, my situation will be unique. I have plans to ask all doctors as an appointment begins if I can record the session (which I have secretly done in the past...oops...that might be illegal). Also, another option, if my strategist is available, perhaps I can have my computer ready with Skype so that she can be "present" at the appointment. There are lots of options, and I feel, already, that I am being supported, that I'm moving in the right direction. I feel more organized, and hopeful.

I will continue to research and adjust my strategy. I will work hard and utilize this opportunity, and I feel really fortunate to have a teammate, my new buddy, my partner in crime Lindsey to bounce things off of, and learn from her fabulous mind. I am so lucky to have my brilliant new friend to help me navigate the medical world more thoroughly. She is a stunning 4'11 package of sweetness and force with a gorgeous laugh and absolutely fabulous demeanor. She has her eyes on becoming a surgeon (she comes from a long line of various doctors), and just from spending time with her I can tell she would be just the type of person I would want working on my body. She is thoughtful, kind, precise - clearly brilliant. She is just the cutest little thing, with such an amazing mind, and drive. I feel lucky to know her, even outside the whole TTF thing, and I can't wait to be following up and cheering her on along the way!

Thank you for all of the financial support, to our home town of Friday Harbor, our late home of Wenatchee, our current home of Seattle, my old home in Fort Wort, both Dan's mother's and my parent's home of West Seattle, the readers of the blog, our friends in Canada, my family in Poland, our buddies in the Middle East, and everyone else whom I embarrassingly forgot. I just feel insanely fortunate. I'm not exaggerating, I think about how grateful I am every single day. Thank you for the donations. I am a lucky woman, to be supported by so many. Dan has said so many times that he doesn't care if we spend everything (easy to do), mortgage everything (we have nothing of value - we rent a place and use a beater vehicle), he does not care, we will exhaust every option, every avenue until we find a way for me to be healthy. The guy is amazing. I'm sure you guys get sick of me going on and on about him, but he really is the most astounding support as far as a husband goes.

Life is about chances, it's about circumstance. Then, after that, it's about what you make of it. I am enjoying life every single day. Sure, I get cranky. Then, I look at Dan, or call a friend (if Dan's not home) and find a way to laugh and get over myself. Life is just glorious. I probably sound crazy, because I know life can be dismal at times too, but Dan and I have dealt with lost jobs, having to sell vehicles, no money, plummeting credit (really gets me in the heart), debt, missing out on creating a family, and so much more just because of cancer. Cancer sucks! But I have Dan. And my family. And I have friends. And the support of my blog readers. And now Take The Fight, and Lindsey. I am energized with this new program. The way that it's organized helps to show the areas that I'm lacking (ex: concise supplement schedule). I've already uploaded a few new notes/research from my little kitchen office that I can share with Lindsey. It's exciting to have this running dialog with a buddy who is medically minded. I mean, literally, it's in her blood! With Take The Fight I'm able to fix the chinks in my armor, so that I can fight as a real warrior. This is truly changing my life.

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.

The Trick About Treatments

Hi Friends,

Good morning. Although I didn't sleep well, tossing and turning, trying not to vomit, I feel refreshed and excited to start the day. It's all because I have such wonderful friends who help me research my protocols, awesome neighbors who print up research for me and take me to my IV clinic, genius brain tumor fighters who help contact experts for more information, and my loving parents who find the best German clinics. I feel so connected, fighting amongst warriors who are battling by my side.

This morning, when I woke at 5:00 am, I was frustrated and exhausted. I'm only at 1,500 mg of the homemade sulforaphane pills and I'm barely keeping it down. The target dose is double that. I'm worried that I'm not getting enough to pack a wallop against Hermie. Dan keeps telling me that I'm doing the best that I can, and that I can only do so much. If I throw up it will ruin everything. I just don't know how I'm going to get the dose up. I always thought that I had a steel stomach, but now I realize that I'm nothing compared to my buddy who killed her astrocytoma. She is a crazy, amazing, insane warrior.

It makes me wonder, more and more, if I should seriously consider the dendritic cell therapy in Germany. It's expensive, and logistically tricky, but if I had endless funds I would absolutely hop on a plane and make it happen. The only reason that I haven't already started the treatment is because I'm trying to beat Hermie with more affordable tactics. The sulforaphane works, it has been proven by my friends, but dear God it is incredibly tough on your body. The plan has been for me to get up to the target dose of 3,000 mg per evening, and then sustain that for two months, then get an MRI to check results. If somehow Hermie continues to grow, we would adjust the protocol, and probably head on a plane and add dendritic cell therapy and hyperthermia to my treatment plan. Dendritic cell therapy is incredibly effective for brain cancer, and since I found the tumor specimen from my brain surgery, I know that they can target the vaccine to my specific cancer DNA.

The whole thing is tricky. I'm not sure how long I can go without sleep, and still keep healthy. Without sleep, constantly fighting painful intestines and discomfort, a person might go crazy. It's not much of a quality of life. Very tricky. But......not to forget.......it works. It comes down to one simple fact, "What are you willing to put up with to save your life?" Well, actually, it's not that simple, it's not just what would you do to save your life, it's also, "What are you willing to do to try and save money?" You don't want to go into debt $100,000 if you don't have to. If we were loaded, and $100,000 was just a drop in the bucket, I wouldn't worry about it. But since we don't have that kind of money, we have to be smart about the treatments that we choose. It's sad that tons of people die of cancer every single day because they can't afford the best treatments. It's sad, but it's just a ruthless fact.

When you have cancer you're playing a tightrope of deciding when to do the right treatments, can you push out the expensive options? If you push it too long you might die. You're constantly evaluating the risks (death), and benefits (saving money).

And, for the record, this past weekend I did get to do something fun! A group of girlfriends headed to Lake Chelan for a girl trip. It was very low key. The weather was cool, which was perfect for the hot tub. It was nice to get out of town. After vomiting (and such) on Thursday night, I took two nights off from the sulforaphane pills. It was glorious. It's fun to be one of the girls, goofing around, talking girl talk. I enjoyed pretending that things aren't so difficult. I loved not having to plan my days around pills & breakfast, pills & research, run around the lake, pills & lunch, pills, research & pills, pills, pills, pills, nausea & pain & fitful sleep. It's important to have some time to just be. Just exist.