SHAPE Magazine Interview

Over the holidays, I was contacted by one of SHAPE Magazine's associate editors about an article she was writing about the language we should use when we talk about cancer. If interested, you can read the article below. The hard part in being interviewed is that things always come up later, things you forgot. When I talked to Dan about it we discussed how in the past I used a lot of "war" terminology. I always used to feel like I was in battle, that my body was waging a war against cancer. I have since changed my view. It was too exhausting to think that I may be "fighting" for the rest of my life. I knew that I didn't have the stamina. Fighting is exhausting. Now I see cancer as unhealthy cells that may be in my body. I see them as damaged, bruised, weak. But I also believe that my body can heal the residual cancer cells in my body, or perhaps turn their activity "off", with my immune system's help. I don't completely know if that's a scientific fact, that cancer cells can differentiate into healthy cells, but I like to think it's possible.

Regardless of how I look at it, we all have different perspectives and they're all right. It's hard enough as it is to imagine us all having to feel the same way. I think that whatever terminology that's comfortable to you is how you should describe the experiences on your journey.

I was shocked to be contacted, and it was an honor to be interviewed. Happy New Year you guys. I love you all.

How do we celebrate?

I never thought I'd feel this way. I never thought that I would use these words, and for good reason. Doctors don't use the term "remission" for brain cancer, because "it always comes back". At least that's what all of my doctors have said (minus my neurosurgeon at UCLA, I haven't heard her speak in absolutes). But today, I feel like I'm in remission, that I'm cancer free. I'm sure I still have cancer cells in my body, like we all do, but something feels different. I feel lifted, and whole, and healed. Does that seem crazy? It feels crazy, but it feels right, like I'm on the correct path with the appropriate protocol.

 
I don't want to jinx myself, so please knock on wood, but for the first time since diagnosis, I feel human. I feel normal. I feel like an epileptic (that may never change), but not a cancer patient. I'm continuing all of my current treatments, but now I'm doing it by choice not out of duty. And I know that this shift alone will do wonders for my psyche.

I never thought that my MRIs would get pushed out to 6 month intervals. It crossed my mind once or twice, but it was like imagining a unicorn. A wonderful thing to smile about, but not a reality. But the world tricked me, see - unicorns DO exist, and I love them! 

I keep thinking about this insane tumor diagnosis and how much it has changed my life. I have gone through so many wild things, like the awake brain surgery, or the hematoma that caused major brain damage, forcing me to relearn everything from using a fork, to learning how to run again, and read again, and regain my vocabulary. There were times when I couldn't even understand concepts. My IQ was ridiculously low. I remember undergoing hours and hours of testing only to be told by one of the top neuropsychologists at University of Washington that I would never recover and read again, that I would never be capable of high level thinking or processing. I remember sitting in that same doctor's office with Dan as we went over the results, as tears streamed down my face. Man how things have changed. Not that I'm that smart, but I'm more than getting by. 

So what do I do now? How do we celebrate?!? For starters, I have decided to start training for a half marathon. I haven't run a half marathon since before I was diagnosed, and have been hesitant to push myself too far because I was afraid of seizures, exhaustion, running down my immune system, elevating my blood glucose for long periods, you name it, I was scared of it. But, I was very inspired while watching the Iron Man coverage this weekend, and I reminded myself that life is short, do what you enjoy.  So I'm starting with a half marathon in January, and my other goal is to do ChelanMan in July, the Olympic length triathlon. I don't know if you guys know this, but when I was diagnosed, I was supposed to participate in the Olympic ChelanMan that summer (I was diagnosed in April) but obviously, that didn't happen. I feel like things are coming back around full circle. I honestly never thought this would happen. It would have been too much to hope for - to live a normal (ish) life. 

So if anyone wants to join me for ChelanMan (you've got several months to decide) please please think about it. Let's get nuts. Let's get silly and have some fun and sweat, and laugh, and feel alive.

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

Findings:

There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Impression:

Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well. 

Daily Routine Revamp

Thank you friends, for your patience; I finally updated my Daily Routine on the blog! People ask me, quite often, what my supplements are, what I dose, how often, the reasoning, the effects, etc. and it's such an exhaustive schedule that I've been working on this for a few weeks. Maybe even months, it blurs. 

In our house we have more supplements than food :)

I've hesitated about naming labels, and giving all of this information because obviously, I'm not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don't want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I've done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn't a hobby. This isn't a business. This is our lives - it's literally about surviving - and if I can help people, I'm going to do it.

Here's the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that's why it's all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don't take it as a list of what you should personally do (although *wink wink* a lot of it is also great generic tumor fighting stuff). This information is just for you to see my schedule.

Daily Routine

I work directly with a nutritionist who monitors my blood levels which dictates the supplements on my list. I have added a couple, or upped my doses, in some cases, but I continue to work with accredited individuals to keep me safe and healthy. I do not recommend following my protocol because your body may be deficient or have excesses which are different than mine. You need to do a unique protocol based on your individual bodily needs. If you want to use my nutritionist, please see the tab titled: My Doctors.

With that being said, I follow this protocol Monday-Friday. On weekends, or on travel days, I do a modified version since I'm often not home and won't have my blender, and can't carry all the refrigerated powders/pills etc. I figure that doing this protocol 71% of the time is pretty damn good. When you start scrolling down you might be overwhelmed, but it's actually a great routine. I'm used to it now, and the scheduling makes it easy to go about my day. It becomes automatic. Best of all, it's one helluva tumor killing concoction!

Please note that this schedule will change and adjust as new blood work is evaluated every three months. 




7:00 am

• 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain

7:30 am

• 5 Longvida Curcumin/2500 mg with water on empty stomach (anti-inflammatory, induces glioma apoptosis, anti-proliferative, arrests tumor cell cycle, promotes differentiation, sensitizes glioma cells to radiation & chemo) - ProHealth Optimized Curcumin Longvida

8:00 am

• 6 grams Ip-6 in water on empty stomach (promotes differentiation, inhibits angiogenesis, chelates excess copper & iron) - Source Naturals IP-6

• 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento

8:30 am

• Chlorotoxin

9:00 am Breakfast
Breakfast Smoothie Recipe - To swollow pills with:
(Fat 27 g, Carb 14 g, Protein 13 g : Calories 297)

• 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe

• 3/4 filtered water

• 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla

• 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci

• 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil

• 2 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic

• 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder

• 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)

• 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder

• 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)

• juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)

• 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)

Breakfast Pills:

• 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - by prescription

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 1/2 tsp Poly-MVA (been shown to slow/stop glioma growth) - AMARC Enterprises

• 6 drops CoQ10 (lowers blood pressure, neuroprotective, reduces headaches, boosts immune system) - Q-Gel Li-Q-sorb Drops

• 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha

• 8 maitake D-fraction/576 mg active proteogucan (boosts immune function, complements chemo, induces apoptosis, sensitizes tumor cells) - Mushroom Wisdom Maitake D-Fraction Pro

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 10,000 IU vitamin D (promotes differentiation, detoxes, balances neurotransmitters, boosts immune response, cytotoxic to glioma, increases tumor suppressor genes, apoptosis, reduces oncogenes) - Thorne Research Liquid Vitamin D/K2

• 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

12:30 pm

• Chlorotoxin

1:00 pm Lunch
Lunch Smoothie Recipe - To swollow pills with: 
(Fat 28 g, Carb 16 g, Protein 15 g : Calories 317)

• 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe

• 3/4 filtered water

• 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla

• 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci

• 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil

• 1 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic

• 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder

• 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)

• 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder

• 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)

• juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)

• 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)

• 5 Brazil nuts/570 mcg selenium (boosts immune system, induces apoptosis, anti-angiogenesis, anti-proliferative, stimulates WBCs, increases lymphocytes & NK cells, reduces headaches & seizures)

Lunch Pills:

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil

• 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

4:00 pm

• 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento

4:30 pm

• Chlorotoxin

5:00 pm Dinner
Dinner Pills:

• 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - Prescription

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin

• 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil

• 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release

• 25,000 IU Vitamin A (anti-proliferative, promotes differentiation, boosts immune system, anti-glioma) - Vital Nutrients Vitamin A (from fish liver oil)

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

8:30 pm

• Chlorotoxin

9:00 pm Bedtime
Bedtime Pills:

• 1 naltraxone/4.5 mg (apoptosis during glioma cell division, increases NK cell production) - by prescription

• 1 lg clove of garlic minced 15 minutes prior to ingestion (protentiates naltraxone, anti-glioma, anti-bacterial, boosts immune system)

• 2 melatonin/20 mg (inhibitory effect against glioma, improves chemo & radiation, boosts immune function, promotes sleep, boosts immunotherapies, reduces seizures) - Life Extension Melatonin

• 12 drops molybdenum/300 mcg (empty stomach: chelates copper, with food:inhibits absorption, inhibits angiogenesis) - BodyBio Molybdenum

• 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain

• 5 thymus sprays (boosts immune function, inhibits glioma proliferation, boosts creation of T-cells) - Xtra-Cell Thymus nf Douglas Laboratories

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. 

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.

Cue The Music

Recently, I was invited to join a group of bloggers as an ongoing roundtable for brain tumor patient issues. When the email popped into my inbox, I was surprised, and honored to be included. Over the past four and a half years I've corresponded with many brain tumor fighters, and family members of fighters; a few times I've been solicited to endorse various products (which I've turned down - ironically they were mostly pharmaceuticals), but I had yet to be invited to submit a post on a specific subject regarding brain tumor patient care or patient issues. I am flattered! The deal is that I submit my post and then out of all the submissions the National Brain Tumor Society will choose a few to be featured on their national website. I don't know if that excites me or terrifies me, but I do love to write so I figured this will at minimum be a fun homework assignment, a good challenge. The topic: What symptoms do you think should be candidates for therapeutic drug development?

When I read the topic, I slouched down, disappointed. I was hoping for something else, anything else, that I could write organically and passionately about. The tricky part? I don't like to take drugs. (Which, humorously, will probably bump me out of the running of getting on http://www.braintumor.org/.) But what do I do? I wasn't about to all of a sudden flip flop my stance just for the chance to be published. At least, I didn't think I would. But as I started really thinking about drugs, I remembered my lorazepam prescription which as been a life saver. Possibly even literally. Lorazepam is what I take as I feel an aura, the premonition of a seizure, coming on. It effectively mitigates my seizure issue, stopping my seizures in their tracks. It allows me to live a semi-more-normal life. So, although I don't like to use medications, I realize that there is definitely a place for them in my life. Not only is there a place, I actually need them.

Even though the idea of taking more drugs is unappealing, I acknowledge that it is in my best interest to keep my mind open. My hesitation as been due to the traumatic side effects I've experienced from the various drugs prescribed for my brain surgeries and seizures. Sure, sometimes they were minimal and worth it, but most of the time I felt like I couldn't win, that I was stuck in some sort of medical purgatory. I've dealt with horrible acne of all kinds, moodiness, weight gain, lethargy, even thoughts of suicide - all from taking those tiny little pills. Side effects are no joking matter, sometimes they're even worse that the symptom you're trying to alleviate. So, anyway, as I've digressed, what symptoms do I think we need more drugs to combat? Huh. Tough one. I have to scan back to my situation: exhaustion, memory loss, cognitive issues, word-finding issues, extreme difficulty handling changes in routine, seizures, nerve damage from surgery, vertigo, brain pain/headaches, scar pain, sensory defensiveness or overload. I can't even think of the other random symptoms I deal with. It has all become a sort of blur that is my life.

But if I was to hope for a miracle drug that could evaporate one or a few of my symptoms, a magic pill that would help me get back to normal, that ever elusive state that we remember fondly - the time before diagnosis - I would hope for something to poof away my exhaustion without causing a seizure. Or I would poof away my brain pain and headaches. Ultimately, I wish I could poof away all of it so that I could run free like the happy little squirrel that I am, but I know that it's impossible. I can't unexperience this brain tumor life. I am forever changed. It's a shame that we can't unknow things, or unhave specific experiences. So, since I will most likely never be able to take a pill to poof all of the symptoms of my tumor, and my brain surgeries, I do wish for something that would give the illusion of health, and would provide a more enjoyable day-to-day life. If I didn't experience scar pain, screw pain, incision pain, and headaches in general or if I didn't experience such drastic exhaustion on a daily basis, it would be a great improvement in the quality of my life. It would allow my brain to heal and rest, and probably assist the recovery from my cognitive issues, even lessen my seizures. All this stuff has such a domino effect. And if the side effects were minimal, I might just get up and dance about it. Oh who am I kidding, I already started wiggling in my chair at the word dance (cue C&C Music Factory, "Everybody dance now..."). Ultimately, nothing is going to keep me down for long, not a headache, or complete exhaustion. I won't wait on a pill to live my life, but I'm not going to lie, the option sure would be nice.

Day 3 Water-Only Fast

Oh man, I broke. I cracked. This morning I woke up with such strong hunger pangs that it was almost unbearable. I tried tricking myself with pint after pint of water. I sipped a few herbal teas, and paced around the house. I thought about going for a walk around the lake, but worried I'd get to the other end and run out of energy and become stuck. And it's cold today, and rainy (finally!) so that seemed like a bad idea.

Overnight, my stomach collapsed, and appeared inverted, concave. At least that's how it felt to me. It was very uncomfortable, kinda painful even. I still made it several hours, but finally relented. I grabbed the most gentle option, my trusty new favorite fruit, the papaya.

I only ate half, and discarded the seeds. Figured they would be too hard on the stomach. You can eat those gorgeous blackish green seeds. They taste like a combo of cracked black pepper and mustard. They're a fabulous anti-parasite food. You can toss them into salads (yum!) or add them to smoothies to clean your system, it's pretty neat. I love using unique foods for health. I figure there's so much that we don't know about the benefits of various food parts, but I'll bet there's a lot of healthy synergistic properties.

So, technically, I failed. I missed my goal by 10 hours. I ended up on my water-only fast for 62 hours. It's definitely the longest I have ever fasted, so I still feel accomplished. My plan is to remain on the fast to the duration, having only broken with that (delicious) half of a papaya. And man, I do feel better after having eaten a little. I imagine that the shorter than anticipated fast was still cleaning out some of my damaged cells, and probably stimulated my immune system to some degree.

From all of my reading around the interwebs, so many people said that when they broke their fasts they had no desire for junky food. That's how I felt yesterday, but man, I sent Dan a text a little bit ago and told him I could eat everything at PCC and then finish it off with a case of movie theater boxes of candy. Even if it was Good n Plenty which are categorically disgusting. So much for this changing my tastebuds, or squelching cravings. Oh well. Guess I still have to rely on self control. Less fun.

A couple of friends, during this experience, voiced concerns about the fast. A couple (remind me to send them Christmas gifts) worried that I'm too thin for a water-only fast (might be the first time I've ever heard such a thing about my body). Anyhoo, I am definitely not too thin. And to prove it I will share my stats.

Age: 33
Height: 5'7 (technically 5'6 3/4)
Weight: 140
BMI: 22
Body Fat: 28% [I still think the guy at the gym over-pinched with the calipers...:)]

So, according to the charts, I am literally dead center in the normal range. Healthy. I think that, perhaps, with the expanding waistbands of our culture - and the world - we have a skewed perspective of normal. I take it as a huge complement that some of my friends think I look "skinny" but ultimately, the optimum stat that I need to achieve is a body fat of 22%. A 6% drop. That's what I'm working toward. Body fat not only holds energy for cancer growth/tumor growth, but also toxins are stored in your body fat. Clearly, you don't want to waste away, you don't want to drop into an unhealthy range, but according to theorists, there is an optimal range for fighting cancer and they purport the 22%.

If you don't have much excess, it allows your body to focus on keeping your immune system strong. Your body can then clean out damaged cells, and keep things running smoothly. There's even research out there that people who live slightly underweight, have a lower incidence of cancer (lucky dogs). So, I'm trying to be healthy, to turn my body into a cancer fighting machine, to give her the most optimum chance to clean out tumor cells, to remove her tumor snacks. A side effect may be looking better, but that's just a byproduct. This is not driven by looks. I already feel good in my skin. More so than ever in my life I am confident. Probably since I have a different view on life since diagnosis. But I do acknowledge that I probably have a good ten pounds of pure fat that's visible on my body. I could lose that and still look really normal. I just need to curb my enjoyment of gorging on delectables. I don't know how I will ever kick my inner monologue that if one cookie is delicious, 10 is better. I feel like I was born that way.

I tried going raw vegan for two weeks and it made me feel awful. So I know that RV is not the lifestyle for me. I have a pretty good idea about what to do, and how I will be successful. It has to do with lots of veggies, and an egg here or there, and some nuts from time to time, and bits of fruit, but mostly it's about a caloric cutback. There will days that I don't restrict calories, perhaps for a hard workout day, or for someone's birthday celebration (like my own in August). It has taken me so long to figure out this whole diet thing, and laughably, I'm still living fluid with my beliefs. But it seems to be getting a little easier with the mantra of cutting calories, cutting portions, and eating clean, whole natural foods. It's all common sense stuff. You'd think I would have figured it all out a lot sooner, but I had to try several various cancer fad diets, hoping for a cure. Now I'm a little more reasonable. Hopefully this one works.

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.

Day 4

Hi guys. I'm officially almost half way through my fast. Woo. Hoo. I do not know how people starve themselves, it feels so unnatural. I have had several questions about the research and efficacy of this fast/food restriction so I have decided to post the most informative research paper I've found. You don't have to understand the whole thing, skimming is almost just as good, either way I hope if you have questions or concerns this paper alleviates any doubt that I'm doing the healthiest thing for my body.

An added advantage to this ketogenic diet that I've been on for the past few weeks, and now the restricted style fast, is that I'm down to 142 lbs (starting point hovering between 150-155). I don't care so much about the weight loss so much as the realization that as each pound of fat evaporates from my body I am eliminating Hermie's pantry. Bwahaahaha!! So awesome! I have had much excitement in the tumor bed, and my right arm and hand are actively going in and out of sensation (mostly out). My right side is very much in tune with my tumor so any activity excites me. It's also scary because it could mean bad things, like growth, but I'm copying research, so it should only be positive results. I'm trying to tell myself that anyway :) I'm depriving myself of glucose and that's exciting! We know Hermie can't eat ketones, so that's a great start.

Anyway, there is so much about this concept, like checking blood glucose and blood ketone levels, etc., but I'm not going to go into it all. Hopefully this paper is helpful. This is definitely tough, but I want Hermie out of my body. I don't want to manage my life and just slow Hermie down. I want to live healthily, prosper, laugh and travel and have a day when my family can come together at a holiday or special occasion and actually be able to celebrate, to no longer have the black cloud hovering over all of us. Hermie's black cloud is ever present, and I'm sick of him. I try to remain positive, but living with a ticking death clock is very stressful. I want him gone.

Seyfried Et Al., TSO

Over A Decade Later

How fun is this, one of my college roommates was in town for work and we were able to meet up for a dinner. So fun! We hadn't seen each other for 11 years. Isn't she just the cutest!?!? Christel and Ashley joined us. It was hilarious, and fun, and I was again reminded of how lucky I am to have such a wonderful life :)

Yep. Those definitely ARE Texas shaped sunglasses.

Thank you for all of the uplifting comments on the blog, and the helpful hints! I should clarify a few things...

1. The majority of my days are on the restricted ketogenic diet. I have lost about six pounds because of it. Some days, on the weekends or if I'm just in the mood to eat more, I eat the generic ketogenic diet. It's very important to restrict my calories in order for the ketogenic diet to starve my brain tumor or alleviate my seizure problem, but in order for me to stay on the diet I have to allow myself days when I can eat as much ketogenic friendly foods as I want. That way I don't feel deprived. I have been in ketosis for almost two weeks now. I have not cheated, nor have I wanted to. Not yet anyway :). I keep my carbs lower than 20 grams per day. If you want more information, as Scott commented, check out Dr Thomas Seyfried one of the foremost researchers on the ketogenic diet, brain cancer, and seizures (along with other diseases).

2. I have been taking lion's mane mushroom (H. erinaceus) supplements in order to boost my t-cell growth and macrophages which together increase your body's ability to fight cancer. However, thank you for the anonymous comment lion's mane stimulating nerve growth factor (NGF), and the subsequent effect on tumor growth. That caused me to research further and learned some frightening things. The great thing about supplements is that there are many options to increase my immune system, and after further research I will not be taking the lion's mane mushroom. Thank you for the help!

I appreciate any and all suggestions/information. Sometimes it's hard for me to sift through things, but eventually I make it through. Research sends me on a billion tangents and when people share their research/resources it gives me a better direction. Thanks!!

And thanks again for the support, for encouraging me to believe. Your help and love are what keeps me energized. Without all of my friends, my family, the readers of the blog and my adorable husband, I would long have fallen into a deep depression. So thank you. From the deepest part of my heart, I appreciate you all!

On To Immunotherapy

Good morning friends! Here's a rundown of things....

1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.

2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.

2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing  only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV.. 

As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally,  NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II  studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).

In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).

3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!

When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.

Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)

Appointment With Dr Liau

The appointment with Dr Liau was AWESOME. She had reviewed all of my scans, and wasn't sure if I even had any tumor tissue. She said that before she would cut me open, she would need for me to have a Dopa PET scan. It's the scan that we've been wanting, but my doctors at UW would not authorize. It's a special scan that's used for low grade tumors. The scan would differentiate between tumor cells and scar tissue.

If the results from the scan show that the tissue in question IS tumor, she is very confident that she can remove it. She would have me do a functional MRI to verify the location of the tumor against healthy tissue. A fMRI is a typical MRI except for the fact that they ask you a bunch of questions, watching the areas that light up. Then they will stick little needles in different muscle groups and watch again for the different areas of the brain that light up. My tumor is in my language and sensory location. All in all she seemed very happy with my current situation, that I seem perfectly healthy, and the area in question seems to mostly be growing out in the tumor cavity which is great! It's better if it grows into the void as apposed to into healthy tissue.

Dr Liau thinks she could remove all the tumor (if that's what it is). I would not need to do another awake surgery, unless something comes up on the fMRI (if my speech or movement areas aren't where other peoples are). I would not need to shave my whole head, she would just shave along the original incision on either side. Sounds do-able!

The meeting happened so fast, it seemed, although she answered every single question. I'm so excited, and I literally adore Dr Liau. I can't go back to UW. I'm a convert. It's going to be tricky to visit Liau for all of our MRIs and appointments, but heck, she is LEGIT. She was on board that I should not do radiation (at this point). She scheduled the proper test, Dopa PET. She is kind, and exceedingly intelligent. She's the best oncologist I've ever met.

Now I need to go, I have an appointment with an acupuncturist. I'm very excited!!

I can't believe how different Dr Liau is compared with my other oncologists at UW. My oncologists at the UW have been pressuring me for radiation since October, and they keep telling me how much the tumor has been growing, constantly freaking me out. Dr Liau was quite the opposite. And, if it does turn out to be tumor, after reviewing the Dopa PET, Dr Liau was very confident that we could remove that tissue, and use it for the personalized vaccine.

This just reiterates to me the necessity of choosing the right doctor. Thank you for all of the support along the way, this journey just keeps getting better and better!

I'm Headed to UCLA!

Yesterday my medical files were sent to UCLA (at least the writen ones - the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau's office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I'm traveling from out of state, I asked for a later appointment, and was able to push it back 'til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven't been sleeping well anyway - I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, "Oh my god, I'm panicking. I'm not ready!!" The nice girl responded, "Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don't have to endure any extra expense or stress. But, just so you know this isn't a rush."

So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau's office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery.

The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?

I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.

The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.

If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.

Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.

It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.

Hermie is Winning

The appointment went in the worst scenario possible. They proved to us that the tumor has been consistently growing. The artemisinin does not appear to be working. We all feel completely deflated. There was crying from each of us. I don't even know how to process this information. I am not winning the battle against Hermie. The radiology reports that had been showing the same measurements at each MRI, had been haphazard and the doctor apologized. He said that he's seen that before, even to one of his family members who has a low grade glioma like me. He said that there are MRI reading specialists all in a room, going case by case, and that they're overworked and they can get sloppy. That they don't always review all the way back a few MRIs to truly compare. So, basically, those reports, which we had been banking on, were bogus. 

The worst part is that the way the specialist reviewed all of the MRIs in front of us, showed that the artemisinin does not appear to be working. It should have been causing Hermie to shrink, which he hasn't. I need to regroup and think about what we're going to do next. 

Perfect timing, my Wenatchee girls planned a long weekend, gifting me with a trip to Kaui. So, tomorrow morning I'll be flying out with Kristin, Michelle, Jessaca and Jenny. These girls always cheer me up and fill me with hope. They're exceedingly intelligent, too, so I'm sure they can help me figure out what to do. 

I am so deflated, and scared. And now I am beginning to understand why so few people survive this cancer. It's vicious, tenacious, persistent, and effing strong. I just have to figure out how to outsmart it - and apparently, it's not going to be easy. 

Thank God for the baby ducks.
There's always something beautiful to find, even when you're down.

Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.

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.