Big Business of Cancer

This is what I call a sexy Tuesday night with my handsome husband...a brain tumor lecture. I mean, really, what's sexier than our brains?! University of Washington, Seattle Children's, and Fred Hutchinson (because they are 3 of 5 Seattle hospitals that are all owned by the same conglomerate - please cement that one into your memory banks) pulled a team of doctors and researchers, primarily for the brain, from Memorial Sloan-Kettering to create a new brain cancer center, here in Seattle, named, The Alvord Brain Tumor Center. The goal is to create the best cancer center west of MD Anderson. 

It was an interesting presentation. I look forward to considering them for my brain care sometime in the next decade or half. Just sayin'.

The Alvord center will be an interesting institution to watch. From what I listened to this evening, I'm trepidacious, and curious. It could be exciting, but during the Q&A portion of the evening not much was answered. The main point driven home was the need for funding/donations. Want, want, want. Why is it that the cancer takes, and many doctors take, and then, after that, they still want more. I'm all for spending, but be smart. And, without clear plans for the future, no step-by-step goals showing how things are going to happen, ideas can turn into expensive pipe-dreams, worse yet, they can become poorly executed, misleading, tools/practices/instutions. I mean, seriously, the head guy Dr Eric Holland has no game-plan to implement his tumor database, he's just dangling it out there. We can all dangle things and ask for money, but it's important to have all the facts. The doctor was incredibly rude when he was asked for a timeline or plan. It was awkward. The super nice guy asking for money was, oddly, a jerk when it came to accountability. Anyway, I won't go into it all right here. Still a great night. Still something to watch.

Saddest Bee

Remember how I refinished that chair for our entryway? Well, even though it's been pretty cold, it has also been gloriously sunny. When I returned from PCC just a bit ago I found this cute little bee trying to sting the flower on the fabric. He kept doing it over, and over, and over. Poor guy. I couldn't help but laugh, though, because it was so sweet, and misguided. I guess I could relate. I have definitely been in his shoes a time or two.

Living Out Loud

Sorry guys, been trying to keep up with communication with friends, tumor fighters, and researchers, and I've been spread a bit thin. Not to mention the fact that it's that time of year for my art donation for my buddy's philanthropy, WPIG. Here's a photo of this year's piece. It was due (and magically completed) on Sunday night.

It has quite a bit of color, and unfortunately the photo doesn't quite capture the depth, shading or texture, but that's okay. Sometimes I wonder who I'm even creating for because I don't think that my pieces would even look that great in our house. The stuff on our walls were created years ago and they're much more monotone, and subtle. Maybe, now, I'm living my life out loud. Maybe I need to chill with the technicolor so that Meg's philanthropy will actually make some dinero off my work. Things to consider as I write this. Hopefully there will be someone who likes it. It sure was a blast to paint!

Franken Whaaat...

Only in Seattle. (Or, of course, Portland.)

Ok. So, first, the security (as expected), was much tougher at JFK than SEA. The doctor's note was definitely a huge help. They still opened all the liquids and held a strip over the liquid. Then they ran each strip through a machine verifying the innocuousness (if that's a word) of my liquids. All-in-all it was still seamless, which is such a relief! One less thing to worry about. I like that.

Second awesome thing, is that I met an amazing woman on my flight home. We got to talking, and it turns out her husband's buddy is fighting a GBM. I hate myself, sometimes - totally embarrassed - because I am such a talker. I swear that I've literally been working on talking less. It's basically a lifelong goal. Anyway, I was so excited to share a few (key pieces) of info. I know how it feels to be overwhelmed, so I told dear Rachel to feel free to share the info, but give a disclaimer so that the friends can toss it of they're already too overwhelmed.

For me, in my life, I will never be offended if people take my ideas and toss them. I'm not trying to prove a point, I just want to help. And the whole point of helping is to be an assistant. It has to be a choice, and above that - people have a lot going on. That's what sucks. Time is the most valuable, and we can't control it. We're only human. We only have so much energy, so many resources, and some of the cancers are evilly selfish, taking everything so quickly. 

Bottom line: I want to help. Take it or leave it. Take a penny, or leave a penny (by way of information to fight gliomas). I just want to learn more and share. 

Who's Quasi?

All I could think about, while riding to JFK, is how lucky I am to be able to travel and fly to fight for a cure. It always blows my mind how fortunate I am. I'm happy to live in a goofy little rental house, to be a one car family, to put everything on hold in our lives to prioritize and travel to get the best care possible (thanks Dan). With our sacrifices and the financial support from donations, I keep chugging along. 

At Dr C's office, I introduced myself to a few more cancer fighters (breast & brain). I shared some of my new research with the friend of the GBM fighter. I don't want to be pushy, but I like to offer the info in case they're interested. It's a fine line to walk, but I always feel like if I don't say something, I may be hindering their health and ultimately their survival. Not even the best researcher can find all the information, all of the studies, all the tricks, and all of the info. We need each other. I know I do, anyway. People continue to help me navigate my path, and it's amazing.  

At the appointment, it was quite a compliment when Dr C borrowed one of my studies to share with another patient. It makes me feel really happy to help! Because I don't have an actual job, or career, I find intrinsic ways to feel accomplished and satisfied. When I'm able to help others, though, that's when I really feel good. I'm kind of being selfish and self serving, because it's definitely not an altruistic thing - I get great joy. There is so much great information out there, and it only takes a few things, the right combination, to kick cancer's butt! I keep reading 20% went into remission and their tumor never came back, or 18% didn't have their tumor come back, always these things are because of just the right cocktail. That's all it takes! No one thing, not even the perfect combination works for everyone. There's always a small few who things do work for, though. You just have to be in the 20% or 18%, it can happen! If you try enough stuff (without hurting yourself - that's why it's so important to align yourself with great doctors), you will eventually find what works. The only tricky thing is time. Time is the real killer.

As I was leaving the office I ran into Pam, a wonderful woman who is helping her husband battle metastasized melanoma. We met back in October. It was wonderful seeing her and matching notes. She's so loving, and even though we were talking about serious stuff we were laughing, and smiling, it was so much fun! 

I did share my radiology report with Dr N & Dr C. Dr C had the best phrase for my Dopa PET test result, he called me, "Quasi-stable." It sounds good to me! I feel like the hunchback of Notre Dame. Wasn't his name Quasi? It's someone's name, was it someone on Star Wars? I can't remember. 

Breeze

Made it to the hotel (Thanks again for the car Steph & John!), and I'm resting. Getting all if my medical liquids through security was a complete joke (knock on wood - I don't want to jinx myself for the future). Honestly, I just put my cooler bag through the x-ray machine. I was armed with my doctor's note, but didn't need it. They didn't even go into the bag. They unzipped the top and zipped it right back up. It was the fastest security screening I've EVER had. Ever. I was traveling with the following liquids: 1.1 liter container, 0.5 liter container x 2, and three 5.5 ounce containers. What the heck? I watched a different guy have to throw out his toothpaste. Weird. Very weird.

Anyway, thought I would share that info for my friends with liquid supplements. I'll let you know if anything changes (if I run into problems), but for now, at least you know you can bring what you need. Yay!! One less thing to worry about :)

PS I had a bagel for lunch. Yum! Carbs are sooo gooood.

Medical Liquids

I've got all my pills, all of my liquid supplements (even the venom), in my fancy new travel cooler, and I'm ready for my flight to NYC for my Newcastle shot. I have a doctor's note for my liquids, and I checked the TSA website so I should be fine. It's exciting to think I can keep on my schedule with dosing while traveling.(For the most part anyway, I refuse to do nasal venom drops on the plane.)

I am so grateful that I'm able to travel solo, and that I'm getting these shots. I have a few questions for additional supplements/medications for Dr C. Hopefully, he'll be as excited as I am about the info.

It's always tricky with glioma cells. If you hit them too hard with treatments they morph into more agressive tumors. But if you don't hit them, they turn into more aggressive tumors. It's all such a guessing game. You never quite know what to do to maintain, or keep things at bay. We're always searching for that fine line. I'll never give up, though. There are people doing research all over the world, all I need to do is get my spider web out to other fighters, other researchers, and other problem solvers to bring it all together into on concise plan. An ever evolving plan, but a plan nonetheless.

Brain Activity is Overrated

Alright, alright, alright. I may have overreacted. I have a tendency to lean toward conspiracy theories, and lets face it, I have definitely been manipulated (given half truths) by doctors which gives me a general distrust of the whole lot.

After emailing around, I got someone at UCLA to forward my questions to the doctor who reviewed my radiology reports. The kind doctor called me Wednesday morning and he clarified as much as he could. That's how it is (as I'm finally beginning to grasp) with radiology, lots of grey area...no pun intended, lots of unknown.

As for the scan, it was explained to me that apparently, Dopa PET scans are read by comparing the basal ganglia (BG) which naturally uptakes dye. Any abnormal area is then compared to the brightness of the BG to determine if it's tumor. The doctor said that my brain, "Has substantially overall low brain activity." (Ouch. That doesn't feel like a compliment.) He compared my brain activity to his experience with other people's scans, and my previous Dopa PET from last October. Apparently, when you have low brain activity it makes your overall brain very dark on these scans. Abnormally dark brains make the contrast of anything in the brain very much enhanced. This brings me to the "ill formed", or whatever it was, thing in my head. The lit area in my tumor resection space is not bright enough to show up on the typical grading scale, which is great.

I asked him if chlorotoxin or Newcastle disease virus could uptake dye or show up on the scan and he had no experience or information on that. 

He explained that the difference between the brightness of the BG compared to my tumor resection area was substantial. They are not comfortable saying there's tumor or that the subtle uptake is tumor cells. However, as you may have guessed, they are not comfortable saying  that it's not tumor cells. 

I asked if he had ever seen a scan like mine with enhancement in the tumor resection area that didn't turn into tumor and he said yes.

"So....you're sayin' there's a chance....!" (movie quote...hey-ooo)

Subtle Doesn't Mean None

I thought it was weird when the doctors used the term, "You don't have tumor mass." It seemed to be oddly specific terminology. It just didn't sit well at all. I always get the copies of the radiology reports and of course, when I opened the mail today (after getting back from my new GP appointment), I read the report. This is the part where my heart sank...

"New ill-defined subtle increased F-DOPA uptake is noted in the posterior aspect of the left parietal resection cavity. Corresponding to T2 and FLAIR hyperintensity signal surrounding the resection cavity which is noted on the MRI. Visually F-DOPA uptake is below to the contralateral striata F-DOPA uptake."

Now I'm in the process of clarifying with the reviewers of the scan to see if I may not have "defined tumor mass" but instead I might have an area of tumor cells. The area of the tumor cavity shouldn't be lighting up like that. I'm very concerned. This is just like having tumor growth on the MRIs but the doctors still say "stable" because the growth isn't that much. I don't like being manipulated. I want to know what's going on in my brain. I need to know how hard to work, or if the things I'm doing are just the right amount.

I'm irritated, and concerned. Hopefully there's an easy explanation for the discrepancy.

Degrees of Separation

Sunday morning homework completed...

So here's a cool story. Absolutely random. I received an email Friday night from one of my closest friends. The subject line was, "Amazing" and the body of the email contained only a link. Confused, pretty sure it had to be pictures of kittens or something random that would make me smile, I clicked.

As I was reading the blog post (some time into it), I realized they were talking about me. Woah! I'm not used to reading about myself, I'm used to doing the writing. I was so humbled, and blown away. Robyn, the author, is such an engaging writer. The whole story, especially when reading it from her perspective, is truly amazing, just like Libbey said.

I remember the first time I experienced how small the world truly is. It was in the summer of 1997; I was an exchange student in Costa Rica. My friend Talia (another exchange student from Irvine, CA), and I were walking down the steps at the San Jose mall when we crossed a woman coming up the steps. Talia and the woman locked eyes and got very excited, they started laughing and giggling, looking around in disbelief. It turned out she was the mother of a Talia's schoolmate. Unbelievable. The world is so small at times, and yet at others so incredibly immense.

People come in and out of our lives and we have the ability to learn so much from each interaction, each situation. I love the fact that the brain tumor world is very small, but beyond even our group there is a great divide. There are those who (for whatever the reason) are solely following standard of care, and there are those who are searching outside the box for the cure that we've been told doesn't exist. Living outside the box is definitely exhausting, it's a mighty journey, a treasure hunt. The reward is so great, though, that once you start looking you can't stop yourself from making it your life's work. It consumes you.

I love my other treasure hunters, and I appreciate them so very much! I learn from you, I feel connected to you, I want you to win, I want us to conquer, and make it to the mountain top. There is no way I could manage this ongoing battle without all of the help. You brain tumor/cancer fighters are very smart, very hard working, and all along you've been having fingers, tools, devices, chemicals, and radiation in your grey matter. You impresses me to no end. Unlike other cancers/issues, our troubles are in our brains. Kinda important territory when trying to read/research/comprehend/remember.

On another note, found out today I'm losing my health insurance (Costco's small business health insurance). Apparently, the whole system I'm in is becoming defunct because of Obamacare. I thought we would be able to keep our health insurance if we liked it? What the heck?! It looks like I'll be moved over to Medicare. Hopefully I get to keep Dr Liau, she really has been my saving grace.

Wait, whaaaat?

I've heard the saying, red sky in morning sailors take warning, but I had no idea that red sky at night meant delight. Cause.....

...I have no tumor!!!! It was scar tissue and inflammation. Hey-oooooooo. Also, we are pushing my MRIs out to every four months.

Although Dr Liau was very busy she helped us go through my pathology (apparently IDH1 mutation does have a better prognosis). She was positive about what I'm doing, and definitely on board with the Accutane, since it works amazingly with the IDH1 mutation. She worked on a clinical trial with Accutane and glioma patients a decade or so ago and it was considered a failure. But in 2008 scientists recognized the IDH1 mutation and when retrospective research was done, they realized that those in the trial with the IDH1 mutation way outlived their peers. I can't wait to start taking it! Liau said lots of those from the original trial are still alive! Yay for looking into my pathology. Yay for having targeted treatment. I am so lucky!!

We're currently waiting for Dr Cloughsey. I can't wait to meet him and talk to him at depth about my genetics/pathology, and what things could work as backup plans in the future if Hermie crawls out of hibernation. (Of course, I'm also really excited to talk more about the Accutane trial results and details.)

Danny and I can not believe the good news, especially since I woke up with my right eye dropping, eek! I hate it when that happens. It makes me feel like my face is melting.

What a relief. I can't even absorb the good news! I'll be pinching myself the rest of the day. Tonight will be a delicious meal with a full bodied red wine, then I'm back to the protocol. Gotta celebrate :) 

Good God I am such a lucky girl!!!! Wow.

Wow.

Double wow.

Phew.

Absolute Accutane

With the final minutes to go in the hawks game (ouch), we are out of here.

I've been feverishly re-reading my packet from nutritional solutions (they don't just give nutritional advice, also they provide off-label drug info, conventional treatment information, and much more), all to organize synergist treatments for whatever they find in my scans. The way I see it, I may have:

A. No tumor

B. Tumor, but still low grade

C. Grade 3

E. Grade 4

There are lots of various options at each stage, and there are different recommendations for each. I'm working on game plans for all possible outcomes. That way I will have a lot of immediate questions, and will have the ball rolling.

One of the things I'm asking (regardless of scan results) is for a prescription for accutane. I was doing research yesterday and my UCLA doctors are working on a clinical trial for low grade gliomas with IDH1 mutations (Liau & Cloughsey) pairing standard of treatment with accutane. Anyway, I can't wait to ask Liau & Cloughsey all about their trial. Apparently, if you have the IDH1 mutation, accutane can really extend your life. That's exciting!

Ok, time to taxi. Don't want to pull a Baldwin.

Sky Gerbils

I got back at around seven o'clock last night. Talk about a long day! Two scans, and a flight. It feels great to be home. I even got to feed some seaguls this morning, very fun.

Now it's time to rest.

One Down

Completed the MRI with contrast. In two hours I'll have the Dopa PET scan. In the meantime I'm chugging water to ease the burden off my kidneys. Can't eat anything until I'm done "scanning", so I might as well make off like a water buffalo.

My arm is ready and waiting for the next needle.

Best message of the morning (no offense to anyone - I have really appreciated the sweet messages - this one was just too hilarious)....

 

The above pic came with a note saying, "Honey Badger says don't worry." Thanks Uzdi! I laughed out loud when I saw it.

While in my scan this morning, I noticed how nice it has been to do this whole thing alone. To wait for them to call my name, or find my way around the hospital, has actually been kinda nice. When you go to an appointment, not only are you a little worried, those around you are even more worried, so it becomes a cloud of anxiety, even in the best of cases. You guys know me, I love my independence. I guess this is just one more step of accidental liberation. Thankfully I've been traveling back and forth to NYC so I have some practice.

Truthfully, I'm enjoying myself. I'm watching people, I'm wandering around in the fresh air (in a t-shirt no less). Whatever they find on the Dopa will be what it is. In the meantime, I'm just going to soak up the world around me 

The Invisible Man

What's missing from this picture....

....Dan. He got stuck at work and when I called to check on him (15 minutes after he was supposed to pick me up to head for the airport), he said he was still in Bellingham. I made a mad dash to our other phone trying to get a taxi (no dice), a towncar (no dice), then I pulled up Uber the car and driver app, finally, success! 

My sweet female driver lyn picked me up (by then it was 3:45 pm with a flight departure of 5:00 pm). I relayed my story, and my gratitude that she was willing to take me to Sea-Tac, and she said she would drive as fast as she could, using all of the traffic tricks to avoid rush hour. By the time we got to the airport we had 40 minutes to spare, and Lyn wouldn't even let me pay (so I hid a $20 in her cup holder in the front seat when she wasn't looking).

Once I made it through security (I was even able to help a lady cut in front of me for her 4:30 flight to Boise - always fun making friends in the security line), I walked up the ramp, toward my gate, they swiped my ticket and I was straight boarding. No fuss. No wasted time.

I feel like my stress level was through the roof, although I did manage to laugh it all off. There is a certain severity with these scans because they take weeks/months to plan and become approved, then you have to coordinate the departments, and the Dopa PET is only available on Thursdays, and they only take two patients a day. It was imperative that I make it for these scans, and guess what, I strapped on my spartan warrior helmet (do they wear helmets?), and here I am. If I can handle NYC on my own, I know I can handle LA too.

Thank you to my parents for scrambling to get me a ride from the LA airport, it was all so last minute. Thank you Susea & Gene for the help, and thank you to Sally for picking me up! Jeff, I was going to call you to see if you were available, but my parents took care of it for me while I was trying to navigate security. 

I am here. I am alive. I will be scanned tomorrow, and all the while I will think about fun things like kittens, and puppies, and turtles, and squirrels, and honey badgers, and snails, and....clearly I need to get to bed. It's late and 6:00 am will come early with all this stress.

Spartan Warriors : 1

Giver-uppers : 0

I feel accomplished. Now for great scan results. If you are so inclined, prayers of any sort are warmly welcomed. :)

Sweet dreams.

Busy Bee

Just got home from my first hyperbaric oxygen treatment. It was AMAZING. I know the research out there pairing it with cancer killing can be very subjective but I don't care because it felt like an hour long meditation. What's good for the mind is what's good for the soul is what's good for the body. Below is the exact HC I used. 

The conference on Friday was fabulous. (In general, life has been superb.) Cheryl Broyels is an angel on Earth, witty, and gentle. I wish we were neighbors and could spend more time together. Tied in 1st place (next to Cheryl) is the ever impressive Dr Ben Williams. Holy cow is he a hilarious, intuitive, rogue cancer fighter. I respect and admire his no-holds-barred attitude when it comes to tumors, treatments, and doctors. He has such an honest view on life, I deeply enjoyed spending time with him! Again, if I could just be bookended in the neighborhood by those two, I would be a very, very happy girl!

At the conference there was also quite a bit of self promotion by doctors. I guess it comes with the territory, but nevertheless I was thrilled by the chance to attend the Chris Elliott Fund conference. It was a very small group of fighters and caregivers, and scanning through the crowd, seeing the various scars on the fighters' heads, gave me an unexpected feeling of belonging. Throughout the conference I had a baseline feeling of gratitude that I don't have a glioblastoma,  then, I kept oscillating between excitement (because of new knowledge), fear (the lack of new treatments), and regret (for not having worked harder to kill my tumor). 

Have you seen the tooth whitening commercial that states, "If you're not whitening, you're yellowing!" It's a very effective slogan. It always reminds me that if you're not researching and implementing new treatments to your protocol, you're missing out.

On Sunday I drove the car four blocks to PCC to pick up my buddy Jules from the bus (it was raining sheets). It was so fun!! If you look at the picture you'll notice that even my double chin was having a blast!  

While we cheered on the Seahawks (what a game), we sipped on our aptly named, Hawks Detox Smoothie...

...delish. 

Oxygen and Experts

You know when you meet someone, and spend a little time together, and you get that sense of kismet? Well, that's how I felt when I met Mackenzie, my colorist. And guess what she did...she clued me into an exciting conference happening tomorrow in Bellevue. The keynote speaker is Ben Williams, PhD, a rockstar in the brain cancer world. He's a man who cured his glioblastoma well over a decade ago by doing a variety of standard treatments, off label drugs, and supplements. There are, I believe, seven different speakers, and two different video chats (one with my new nutritionist Jeanne Wallace, PhD and the second with Dr Charles Cobb - the man doing the research with Valcyte). I'm very excited to learn about the most up-to-date drugs, treatments, and all-over care. The conference is an all day affair, starting at 8:00 am until 5:00 pm. The entire thing is free, and they even provide lunch (can't wait to see what they serve...my nutritional voice is skeptical, yet hopeful). Unfortunately, since it's happening on a Friday, Dan can't join me, but my parents got really excited and asked if they could drive over from Wenatchee and come with me. I guess it actually works out pretty well since my parents don't work on Fridays anyway, and it will give me an excuse to give them hugs. If you want to attend, check out the Chris Elliott Fund website, they are hosting. I just can't believe how fortunate I am that I get to attend this, and meet so many influential people in the brain cancer network. This. Is. Huge.

I'm so excited about this!!! It's going to be exhausting, and I'd better record a bunch of it or I'll forget most of it (maybe they'll have transcripts later?). I just love it when people send me information about brain tumor stuff, I am SO grateful. It's impossible to keep up-to-date on all the goings on. I feel like I have all these helpers, like an army. You guys are like my own brain tumor seals, or those super awesome reconnaissance peeps. That what's you guys are. Totally stealth. Totally amazing.

Also, I am very excited to share that I have my first hyperbaric oxygen session on Monday. I will have three consecutive sessions on three consecutive days, then the following day (Thursday) is my Dopa Pet scan and MRI scan down at UCLA. The oxygen therapy is very exciting. Cancer hates oxygen, so the more oxygen you take in, the more you starve the cancer. That's one of the reasons why walking, and meditation are so beneficial. Mentally, I'm looking at my sessions as lung massages. Very fun! Even Professor Seyfried touts the benefits of HOCs along with a low carb diet.

One Example of a Hyperbaric Oxygen Chamber

Ok, I'm off on my walk to the blood lab again, apparently they didn't draw enough blood for all of my panels the other day. Ugh. More needles. Oh well, at least I don't have to pay for their mistake. Well, I guess my veins have to pay for it, but whatever. Not the end of the world, and I guess it forces me out for a walk, so maybe it's a good thing. :)

I Love A Good Pun

After a billion phone calls, and emails, a few dialed-in dates, then a few fall-throughs, we have solidified all four UCLA appointments. Phew! Now we can book our flights and figure out where we're staying. Dan insists on taking off work to join me, which is going to be really nice. Just holding his hand lowers my stress levels. 

Also, today, my aunt Anne took me to a new dermatologist. (I like to shop around for doctors as you well know.) I really liked this woman, but of course she found five new moles that she wanted to biopsy. (I politely declined.) I don't know how to handle this new world of skinning people alive. Is it necessary?

Truthfully, I can't take on another area of my life that demands so much attention, it's frying my brain. I think I'm going to table the whole "mole" situation for a bit.

When I got home from the dermatologist, and spent some time with my badass aunt, I noticed that my blood results were back. Things look mostly good, except for high serum phosphorus and low serum alkaline phosphatase. Oh, and of course a maddingly high cholesterol level. What the heck?!? Apparently that whole low carb thing didn't make me immune as the experts say. Bollocks. 

I'll be talking to the doctors over the phone in the morning and they'll explain all the bloody results. For now I will rest, which will be easy to do after my food coma. I made us my favorite dinner tonight, pure comfort food...

Shirataki (yam - no carb) noodles

Chicken breast 

Coconut milk (full fat)

Turmeric

Chili powder

Granada curry

Fresh cracked pepper

Purple onion

Garlic

Broccoli

Cilantro

It's my figgitty fav dinner. Simmer the chicken in the coconut milk with all the spices until the meat is cooked. Remove the chicken breast. Add the broc, gar, and red.o and cook for a few with the noodles. Then dish up, piling on the fresh chopped cilantro to garnish. Piece of chicken if you know what I mean. It's easy, and delicious. Don't skimp on the spices though, that's what I recommend. 

Unnecessary Surgery/Radiation? No Thanks.

Why oh why does my dog eat weird things then poop all over her bed? WHY!?!? Ugh. Good afternoon. That's the news around our household. Gross.

Thanks for being patient with me. This past week I started a new relationship with a superb nutritionist out of Utah. The company is Nutritional Solutions. They work with cancer patients, specializing in brain cancer. All of their recommendations are based on research, not anecdotal stuff. It's pretty cool.

So, yesterday morning I wandered over to Lab Corp and had several vials of blood drawn for eight different panels. I'll get the results in about a week and I can review it with my new nutritionist to see areas where I'm healthy and perhaps some others that I can work on. I'm really excited about it! Although it's a daily struggle to keep up with life, I feel like I'm slowly getting the best doctors and specialists, creating a great team.

Yesterday, after feeling great from my blood draw - all jacked and pumped (a little Pete Carroll for you) that I was getting things done - I received a phone call from my health insurance, of course they would deny me for the Dopa PET scan. I think Dr L is going to submit more clinicals to prove the necessity of the dopa, therefore convincing my health insurance to cover the scan. If they won't cover the scan I feel like I should do it anyway, and here is a story to prove it. I hope this friend of the blog doesn't mind me sharing her story, but I won't name her, so I hope that covers it.

This woman and her husband have had all the same doctors at UW, the same oncologist, Dr Mrugala, and the same radiation oncologist, Dr Jason Rockhill, as I did. Her husband has been battling a brain tumor and had it resected. Several months after the brain surgery, on a followup MRI there was an area of increased T2 signal/flair, and the doctors at UW wanted him to do another resection, and more radiation (or maybe it was just radiation they wanted) because they said it was tumor growth. Long story short, the wife was terrified and asked for a referral to get a second opinion. After a couple more appointments/discussions with various doctors, they ended up at UCLA with Dr Cloughsey (my new neuro oncologist). Dr Cloughsey scheduled a Dopa Pet scan, and it's a good thing he did because the area of T2 signal/flair was just scar tissue. SCAR TISSUE!!! Apparently scar tissue can form months after surgery and/or radiation as your body heals, and it can continue to grow, mimicking tumor growth. (Fingers crossed for that result after my scans next month!) THAT is the problem with MRI scans, they do not show if the area is tumor, or scar tissue, and doctors are over treating, or mistreating, and who knows how often!?!

Man, if that story doesn't teach us something, I don't know what will. It's just shocking. Please, please, go to the best doctors, go to the facilities that have the best technology, the best machines and up-to-date procedures. That story is incredibly profound, and terrifying, and it shows the lack of knowledge and ambiguity of these MRIs. An unnecessary brain surgery? Unnecessary radiation? Holy crap. Holy. Crap.

As a side note of other happenings in our life, I had three moles removed on my chest last week - left breast, sternum, and right areola. I received the pathology results on either this Tuesday or Wednesday, I can't remember which, and they came back, respectively, moderate dysplasia, moderate dysplasia, and severe dysplasia.What is the deal!?!? I have the most resentful, disagreeable chest. I don't know what the deal is, I've never been a topless bather. I don't know why the moles on my chest continue to try and turn into cancer. Sometimes it's really hard to keep up with my health, especially when there are so many different areas of my life that have to be monitored. The dermatologist wants to remove more of the tissue on and under my right areola. What are they going to do? Remove my nipple, dig out the underneath, then sew my nipple back on? Or would they toss out my nipple and sew on a synthetic one? I can't see how they would dig out everything under and around the area and leave my nipple which is immediately, directly, right there. EEEK! Remember a year and a half (or so) ago when they removed a massive portion of my right breast because of a different mole? It had several stitches. How in the world will they do that with the area around my nipple? Sorry if this is too blunt for you, or awkward to read, but I often look at my body as a specimen. It's just body parts.

Second side note, and completely off topic (Phew!)...our wisteria is blooming! Dan and I used to have wisteria in Wenatchee but it never bloomed. This is so exciting! And we can see it from our bedroom window. It's a soothing view. :) It's little things like happy plants that aren't lost on me. In fact, they literally make my day, keeping me smiling, and so very grateful to be here in this life, on this planet, with all of you peeps. I love it that life really is about the little things. It makes everything feel so simple. So doable.

*Writing this post took just under 6 hours. Boy how life has changed. It's much more challenging. But I'm doing it. I'm making it. Little by little. :)

Little Break

Hi Friends, I am having a hard time typing, and don't have the energy to keep up with communicating with everyone. I'm just so exhausted. I have been keeping up with the venom but at this point I can't even begin to call everyone back, respond to the emails, texts, and such. Please forgive me, and be patient. My brain just isn't working quickly, and the idea of trying to find the energy to catch up is too overwhelming. Just writing this post has been a cloud over my head because I'm just so dang tired. 

I did have a fabulous weekend with family though. My beautiful, kind uncle was married. It was an honor to be invited to the small ceremony, to hug the family, laugh at the stories, and to be included. It was absolutely lovely. My uncle is such a special man, with a huge heart, and I absolutely adore him. 

Angry Squirrels

My independent, stubborn leg will not stop me from slogging around the lake. Neither will squirrels throwing pine cones. (I swear it almost happened once.) Nor will birds with incredible aim. I once heard that being hit by bird poop was good luck, but I'll bet that the saying is just to make people feel better. Kind of like rain on your wedding day. Either way, it's pretty hilarious! I'm pretty sure the poop was for Emma. I'm just saying....

Scheduling Dopa Pet

Lately my brain has been foggy, for the past few weeks. I've been fighting it, but it's getting worse. Word finding, exhaustion, sentence completion, loss of control of my right hand and dragging of my right foot. I'm constantly in vertigo, and often I will will just fall asleep out of nowhere. It's scary. Because of this turn of advents, we are trying to get my Dopa Pet amd MRI scans scheduled sooner. I'll need to fly down to LA and I don't know how to do it all, but I'm sure my family can help me. I'm having problems reading, and taking care of things. It's sad. I hope that this isn't the beginning of a downward spiral. I haven't had these kinds of problem since I was first out of the surgeries. What's happening to me? My mind feels like it's melting, and my body feels like my right side is weighted down. I lay in bed every day, no more walks or running. I'm not sick though, feel like that would be better though. I feel crazy. And it's sad that Dan is noticing the deficits too. I've been having a nice long run of life, but I'm not ready to give up. But how will I fight when I can't research? When things don't make sense. I'm so confused. And scared. And very tired. The worst is noticing my mind evaporating. Please excuse my lack of emails/phone calls. I'm just too pooped these days.

My Super Amazing New Hair!

You know the saying, "Fake it 'til you make it"? Well, I love it. I use it all the time when I don't feel happy, forcing myself to smile as I wander around the house, or I'll make it a point to Google silly kitten videos, or if neither of those work, I try to change something about my appearance to change my attitude. The problem is that I haven't been feeling that great about myself for quite some time. Although you can't see all the short patches of hair on my head (because I am a hair ninja that pins, and tucks like a maniac), they are there, and usually, at home, Dan and I look at the awkwardness all the time. It bothers me so much that I don't like to shower. I hate the feeling of putting my fingers through my hair, feeling the scar, and the knobs around my head where screws hold the metal plate under my skull. Since they basically sliced my skull from front to back, when I suds up my hair, if I rub both sides of my head at the same time the scar pinches, and it's horribly painful. Similarly, when I sleep and lay on my side, it pinches the scar, causing my head to feel like my head is a nesting doll being unscrewed. Back to the shower conundrum, don't worry, I still bathe, but feels like it's a chore, not a point of relaxation.

I often live with my hair in a bun because I don't know how to style my hair around the short patches, or I'll do a "half up" style which I don't love, it's pretty Snookie-ish, but at least my hair isn't in a knot. Anyway, it's a silly thing, but when you don't feel pretty, you're not nice to yourself. You don't feel worthy. When you don't feel great about yourself, you aren't the best partner. Dan has always loved me no matter my hair length, body size, mental capacity, and I am very grateful, but it's important for me to feel good about myself, to feel proud, and to love myself not just for what's on the inside, but to enjoy my shell too. I mean, some people argue that looks don't matter, and I agree that they shouldn't, but I do judge myself. I judge my looks, and I want to feel good about the face looking back in the mirror.

With all of these thoughts hunkered in my brain, I started reminiscing about the most fun era of my life, a time when I was carefree, I felt loved, I felt capable, independent, that the world was mine to explore, that life was truly endless. These past several months have had me so nervous to cut my hair, not sure what could be done to fix the patches, but instead of thinking back to happier times as memories, I decided to take matters into my own hands, to harness my resources and just wing it. So, yesterday, I headed into the city to see my buddy Jesse (he's cut my hair since I was 14ish), and brought with me a photo of my favorite hair from my favorite era for my friend McKenzie who does my color. We conferred together and decided we couldn't do the hair style, but we could absolutely do the color. Success! I haven't wanted to spend the money on getting my hair cut (it has been well over a year - other than Dr L's shaving for the October surgery), but I'm over that. It's just silly. There are things you can cut back on, other areas to save, but getting your hair done doesn't have to be one of them. That's my new stance anyway.

So, now I have fun new color and cut! And it makes me feel happy, and smiley, and sassy, and normal, and just like string theory, it connects me back to my favorite time of 2008-2009, it's almost as if I've been reading a book about my tumor life, not living it.

It's really odd that hair makes such an impact, and I don't know why I keep forgetting that fact. And also, I don't think I'm going to continue to feel guilty about spending money on getting my hair cut. That's just silly business. I wonder if I was just punishing myself, in a way, for having the tumor. I know that I told myself many times that I didn't deserve to get my hair done, that it was ugly, and gross, and not worth the money or the effort. Then, I would put my hair up in a bun and delve into stuff that actually matters, like research, communicating with friends and family, ordering pills, scheduling appointments and travel, etc. Why do we do that? Be mean to ourselves? Nothing good comes from that mean voice in your head. I shut her up the only way I know how, by doing the opposite of what she says. :)

This first photo is from 2008, the year I met myself. It was the year I blossomed. And it was the year I ran into Danny, when he swept me off my feet (literally, there's an actual story behind that). In fact, Dan took this picture...

 Quite a far cry from last October...

And, of course, the new and improved Jess...

I forgot to take a picture of the actual 'do', but it's awesome. It's shorter on the top, and tapered in areas. It's very Joan Jett, except, clearly my hair is curly, and now honey colored. It's very rocker chick meets island girl. I'm pretty excited about it! It's breathing new life into me. Change is good. Unless it's describing tumor growth. (Sorry, can't help it, macabre is my middle name.)

Everyone Needs a Makeover

Not much more to do on a stormy September day than finish art projects. You can see a before and after of a chair makeover I completed today, down at the bottom of the post. By the time I was finished it was already sunny again, just another beautiful thing about Seattle.

I don't know what's going on, but I feel down, almost depressed even. That's not normal for me. I feel such stress about the Dopa PET and MRI scans in October. I'm scared. What if nothing I've been doing is working? What if they find out that the area in question is tumor. Will I need to start chemo?

I am dreadfully sick of having a tumor. I'm sick of having to work so hard to fight something that is this powerful. I will continue to fight, because it's what I do, it's the only thing I've got, probably the reason why I've survived so far, but my heart isn't in it right now.

I just want to be normal, have normal activities, normal thoughts, not always be afraid, not have to do all this work. Sorry for complaining, I'm just scared. I'm tumor exhausted. It's like a mental jet lag, but without the fun part of traveling.

Here's a photo of a chair that was left at our house from the previous renters...

Here's a photo of the chair after I got my grubby hands on it...

Rainy Run

This morning, Emma and I swapped our 11:00 am walk for an 11:00 am jog, and it was glorious. It dumped rain, and all I could think about was how pleased my plants must be, Seattle has been much too dry for my poor little green guys.

I'm still honing my diet, and although it takes a lot analysis (low carb vs paleo vs keto vs restricted or a combo of a few), I think I'm really starting to figure out what's going to best for me, and easiest for me to succeed which, of course, is paramount. If a lifestyle or diet is too difficult to maintain, what's the point?

It was so much fun jogging today, it was the first run around the lake with just Emma and I in several months. What a gift. Running helps me think. Somehow when I walk it just doesn't clear my mind, or trigger those endorphins. Walking feels like a job, a chore, and jogging feels like a gift. I probably sound like an oddball, but heck, we all have to find our joy in life, and for me it's jogging. I don't want to feel like I'm constantly trying to delay my death, trick by trick, even though technically that's what I'm trying to do. I focus so much on treatments, supplements, research, MRIs, trips to doctors, contacting research institutions, emailing hospitals for possible clinical trials, now taking the venom several times a day - inevitably, I just need breaks. I realize that jogging will raise my blood glucose, therefore feeding the brain tumor, but I guess I've come to the conclusion that it's a necessary evil. I figure it's better for my psyche that I run, than to feel disconnected to society, to Mother Nature, and most of all myself. Like I keep saying, I don't just want to be alive, I want to live.

Change is Good

First, before I get into my post, I am sending a huge hug and thank you to my buddy Jess (Abu Dhabi), her father Leopoldo, and my adorable mother-in-law Linda. I forgot to mention that back after the first brain surgery in 2010, Linda sent us some info on the chlorotoxin, but we all thought it was nuts. Then, a few months after that Jess's stepmother's (Leopoldo's wife) sister traveled to procure some chlorotoxin while she was undergoing chemo for her cancer (I hope I'm remembering that correctly). Anyway, I wondered if it would even work for me, for brain cancer, but it all seemed too outlandish, it seemed crazy, and unattainable. As a side note, last I heard, Jess's stepmother's sister is in remission.

Recently, when we heard about the clinical trial at UW we remembered that that chlorotoxin had been in our minds and bounced around in our mouths a few years ago. That started a chain of events and once we started looking into the venom, Jess offered to help me track it down. (Most websites are in Spanish and lucky for me, Jess is fluent.) Once we decided 100% that we were going to do it, Jess's dad offered to bring me the venom from the Mexico side (the clinic has a satellite in Mexico), being that he lives in Texas and has family in Mexico. Anyway, turned out my parents wanted to go to the source and see the scorpions, and meet with the people who are harvesting the chlorotoxin. But all of this was expedited with the help of Linda, Jess, and Leopoldo, and I am SO grateful!

My other news is pretty big. I have decided, after struggling for weeks, to go back to my Densmore Diet. That's my new name for it (derived from the townhouse community where we were living at the time). It's the diet I was on from Oct 2011 - April 2012. During that time my tumor did not grow. The majority of my diet was comprised of vegetables, then lean meats (organic, wild, grass fed), minimum amounts of dairy (grass fed, organic), nuts, no sweets, an apple or two a day, and green drink after green drink after green drink. I drank zero alcohol, and I ran almost every single day (some days twice), it was glorious. And just for the record, the Densmore Diet was restricted calorie, but I didn't care because the food was so good! And technically, the diet was restricted, but I didn't over analyze the calorie counting. I was an eye-baller, not a weigher.

It has been very hard to come to this conclusion, mainly because I've read all of Seyfried's research on the restricted ketogenic diet, and I know that the RKD has been proven to stop, slow and even reverse brain tumor growth. However I can't seem to stay on the diet  I'm going to list all of the reasons why I'm reverting back to my old Densmore Diet:

1. After about 10 days on the RKD I start to get stomach cramps. I get black stool (nasty!), indicating irritation, and blood in my upper digestive tract. It's something that is easily eradicated with the ingestion of veggie carbs or legumes, but it's not fun. So I fall off the wagon to soothe the symptoms, then once I feel a little better I try and get back into ketosis, but inevitably it happens again. A constant cycle.

2. When my blood glucose hovers between 50-70 it causes massive cravings. Bad cravings. Not immediately, but after a several days. The most common one is for chocolate chip cookies, and eventually, I always give in. I end up yo-yoing. My body freaks out when my levels are that low, and the powerful urge to grab a cookie is just a survival mechanism. I never reach for an apple either, it's always the sugar packed baked goods, probably because they'll spike me back up the fastest.

3. It's really messed up to hate yourself for eating too much broccoli and kicking yourself out of ketosis. Trust me, it's happened to me many a time. It's disheartening. I end up feeling like I'm always on the verge of failing. Then I do fail, and with that I feel like it isn't just an isolated fail, but that I'M a complete failure.

3. The RKD makes me feel physically gross.

4. The RKD makes me feel like I'm constantly eating just to eat but there is no joy in it.

5. The RKD makes me feel fearful about every minute, every blood glucose reading, every food choice.

6. The RKD has taken away my cardio, and my weightlifting (spikes blood glucose too much). All I have been left with is walking (or maybe gentle yoga), which, as much as I try, I am not passionate about. Exercising has been a joy and a major connection between Danny and I, and I miss it. I miss the slogging (slow jogging) through the rain with Emma, of feeling the blush of my face, the forced deep breaths engulfing my lungs with life.

7. The RKD removed my joy of cooking because no matter what you do, the recipes are not delicious. (Not enough veggies!) Not to mention I don't have the energy to cook for me AND Danny so we end up eating separately. Different foods, different schedule. It's lame. Also, I cook and eat much healthier than Dan, but most of the time he's left to fend for himself and it's bad for his health.

8. No cancer performs exactly the same, no tumor behaves the same. There are people that have much outlived their diagnosis, some even for decades, and no two people have done the same exact thing, eaten the same exact diet, lived the same exact life.

9. I found my tumor by listening to my body. I asked for the MRI that found Hermie. Why would I keep fighting my body, who clearly HATES the RKD. Seriously, it's insanity. I'm trying to force something, and at a certain point you need to step back and assess your behavior and choices.

10. I am a healthy woman, and I want to live a long happy life, and the RKD makes me question my quality of life. A life without kale smoothies, sauteed brussels sprouts, unlimited garlic, and onions, and zucchini, and watercress salads, and apples, is no life at all.

11. The second you stop doing the RKD your tumor will quickly return (there is evidentiary proof in Seyfried's research). The diet is not a solution. It will not save you; it will not cure you. It's fabulous to aid in your treatment, to enhance efficacy, but it's never going to fix you alone.

12. I could go on further, but I think you're getting the gist...

I can still learn from my RKD experience, and clearly I want to do whatever I can to be healthy, have a healthy body, and brain with no tumor, but I also want to live. Really live. I want to be smart about my choices, and some may think I'm foolish, or that I'm giving up (don't worry, you can't say or think anything worse than what I've felt about myself) by not being on the restricted ketogenic diet, but we are all different, and I have to listen to my body. The wonderful thing is that I can always get back on the RKD. I have the books, the recipes, the measuring tools, and such. For now, I need to not just be alive, I want to feel alive. And if that means green smoothies, and salads, and crudites, and apples, then so be it. It's not like I'm baulking at avoiding alcohol or processed foods, I don't care so much about that stuff. If jogging, and veggies and some crunches and squats are what kills me, then it is what it is.

Every suggestion, every research paper, every non-invasive treatment, every supplement, the best diet, I wanted to do it all, but it's just not that simple. In fact, it's impossible. I'm doing the best that I can, and I'm going to forgive myself for not being able to master the RKD. In life I'm really trying to be kind to others, and that includes myself. The relief of allowing myself vegetables and exercise has already lifted my soul. I can feel my body relax, and that is worth quite a lot!

My new favorite green smoothie...

Kale, Parsley, Ginger, English Cucumber, Coconut Water, Lemon, Splash of Pineapple Juice

Oh no!

It's happening already....

Day to Day

Good morning! I've got the venom routine down, now I'm fiddling with the diet. I emailed the clinic too see if their "low fat" instructions have to do with an interaction with the venom or if they are purely giving nutritional advice. If there's some sort of interaction with the venom then I'll be all about the green drinks again (Yesss!!)), but if it's just a suggestion for general health I'll stay with the restricted keto (or a version of). I have the restricted keto ingrained in me, I still check my blood glucose, and I get a visceral reaction when my glucose is above the 70's. I become very fearful that I'm feeding the tumor, and that's not good. In a way I kind of wish I never would have purchased a blood glucose monitor. It's weird to be afraid of eating a whole apple. On the RKD you can have apple, but just a little bit and you have to eat it with some fat to keep the ratio.  It's complicated. I love the benefits that are shown with the RKD but I dislike the reality of the lifestyle.

On a very positive note, Dan sold our truck! We now have October's immunotherapy shot paid for. Yay! You know what ISN'T fun? You get penalized by your insurance when you only have one car. It's a good business model for the insurance companies because they want families to have all of their cars with the same company, but if you are a one car family you get zero discounts (unless you guys know of any companies that support single car families...please let me know), and you pay much more for the same service. Ugh.

Man. Dang it. Just got interrupted by a phone call from my health insurance. Somehow they think they need to call me every few weeks to ensure that I have end of life directives, and they want to assess if I will need hospice soon. If that's not depressing, and terrifying, I don't know what is. I got a little upset and told them that I would call THEM if things got worse, or maybe they would notice from my claims that I was clearly having problems when that time comes. I don't need an effing reminder of what I'm going through, or what they're expecting to have happen. It makes it hard to stay positive. I've had a few conversations with friends about my confusion over the term "cancer", or the concept of being "sick". It's weird because I feel pretty great, but clearly I'm not normal, or technically healthy either. That's why I'm doing all of these treatments. That's why my life revolves around research, supplements, immunotherapy shots, diet, and now the venom. I'm healthy, but at the same time I'm stuck in this fog of responsibility, always oscillating between fear, hope, reality, and dreams.

As I have MRIs every three months, and shots in NYC every two months, and supplements four times a day, and now eight applications of venom a day, it can be very overwhelming, and although I feel physically well, my life does not feel "normal" by any means. I'm stuck in these tiny bubbles, always one moment to the next, one day at a time, and don't get me wrong, I love it. I LOVE being alive! But we can't ever plan for a trip, for an actual wedding or wedding celebration, or a holiday, or anything long term like having children. That fact doesn't normally bother me because I'm literally living in the moment, but when I'm slapped with a phone call from the nurses of my insurance company, it all comes crashing back to my consciousness. One day leads into another day, and before you know it it's been over three years of a diagnosis, of doctor's appointments, of MRIs, of brain surgeries, of traveling for new and better care, researching and researching and researching. I love my life, and I'm very happy, but it is also scary sometimes to think that this could be my life up until the end, just day to day. Each three month span brings with it the fear of recurrence and thus more significant treatments like chemo or radiation. I've already dodged the radiation bullet once by saying no thank you, but there is always a lingering fear of a time when I may be so desperate that I'll acquiesce.

On days like today, all I can do is find something that makes me laugh, and this is it, a picture of Jules and I a few days ago being ladies who lunch. Keeping it classy...

Chlorotoxin

It's been a busy several days. Rested for a bit, then headed up to Friday Harbor to attend a memorial for one of my classmates. Tough stuff. I made it home Saturday night, just in time for the arrival of my newest additional treatment.

My parents arrived in Seattle at around midnight this Saturday. They had traveled to procure a treatment called chlorotoxin. They got it from a clinic, and I know some of you will think we're crazy because there's only anecdotal reports, but who cares. Why not try it! The worst thing that could happen would be a lowering of the inflammation in my body and at best it could cure me.

There's an actual protocol to follow, and please know that the clinic that they went to was incredibly thorough, wanting all of my pathology, radiation reports, blood work, among other stuff. Before my parents even flew out on their journey, the clinic in had reviewed all of my medical history. In fact, this clinic had the most thorough evaluation of my medical situation out of all my dealings with doctors.

So yesterday morning I began my treatment journey with the chlorotoxin. It will last for three months. I have four times a day that I measure out 25 ml of my dilution (it's suspended in distilled water), I hold the amount in my mouth, swishing it around under my tongue for one minute, then I swallow it. Also, four times a day I use a different dilution (much more concentrated). I lay on my back and suspend my head over the edge of the couch, using the camera app on my cell phone to direct the dropper, I release two drops of the diluted chlorotoxin liquid into each nostril.

The first time I did the nasal drops, we had used the same syringe to extract the pure cholorotoxin and put it in the distilled water. Not remembering that, when I had the first drops I'm pretty sure the entire green lake area heard a guttural scream. My eyes instantly released streams of tears, and I barely kept myself from sneezing. The burning sensation eventually lessened and I was fine. About 10 minutes later my right arm and hand started acting very, very weird. Not like a seizure aura feeling (which I also feel in my right hand), but just a very, very odd sensation. Then, there was a rushing, like waves ebbing and flowing between my fingers, my hand, and my elbow. Then, like a fog lifting, I could feel my hand again! My hand was healed! It felt magnificent. I couldn't believe it!! We looked at my two hands and on my right hand we noticed the pads of my palm, along with my pinkie and ring fingers, were bright red. Lot's of blood flow happening. We reminisced about how I couldn't feel my right hand after the first surgery, back in 2010, and it felt so weird that I never wanted my hands to touch, or hold Dan's hand - or really use my right hand at all. A real tricky situation for a right-hander. It got better before the second surgery, but again in October of last year, after the third surgery, my hand was funky again. My right hand, arm, leg, and foot are all off, and as far as I can tell it has not been getting better. Anyway, for a brief few moments, perhaps even five minutes, I felt normal again. But, as things go, the sensation faded, and as it did, my arm, hand, leg, and foot became exhausted. It was as if I had just finished a full marathon without ever having trained.

I haven't had a repeat of the healing episode during any of my other applications, but we believe that's because I accidentally had a stronger dose at the onset. All of the other times that I've ingested the drink, or used the nasal drops, have been innocuous, but since I already know from the inception dose, that this is not just a random treatment. At times it feels like it's just distilled water, because there's really no taste, but there's definitely something about this stuff. Even if it was just working on lowing inflammation, I'm happy with that. And if it was cleaning out tumor cells, then Hell Yes!!

So, I'm adding this treatment to my newcastle disease virus treatments. (The clinic says that the chlorotoxin does not interfere with immunotherapies, chemotherapies, or radiation. In fact, they work synergistically.) I have a three month supply, and although I have 8 applications a day, it is already getting me into a fabulous routine. I can do the drink, and the nasal drops at the same time so I only have to get to the kitchen at 8, 12, 4, and 8. They want me to eat a low fat diet (the exact opposite of the keto - isn't that how it always works), and vast amounts of raw vegetables and fruits. No alcohol and no smoking are the directives which will not be a problem. I'm very excited for this phase of my cancer life. I thrive on routine, and I love a good challenge.

A HUGE thank you to my parents for doing incredible amounts of research, corresponding with the clinic, and then of course for traveling all the way to procure the chlorotoxin.

Here's a photo of my first shot of venom. Delicious :)

You know, this chlorotoxin thing sounds crazy. We first learned of it back in 2010, but it seemed outrageous. However, the real turning point was when family friends who were dealing with their cancer at University of Washington had a conversation with their oncologist, and he mentioned that clinical trials with the chlorotoxin are underway at the university. It's not to drink it (of course, that would be too simple), instead they are working with a form of synthetic chlorotoxin (gotta do synthetic so that they can patent it), to paint tumor cells to increase accuracy during surgeries. Anyway, I don't know the whole story on that, but when we connected those dots we immediately decided we needed to go to the source, and give this stuff a shot. We refuse to wait for years, and years, perhaps decades for clinical trials to become standard of care.

Hopefully this chlorotoxin is cleaning out the inflammation, and cleaning out the tumor cells. I'm very impressed by my accidental overdose with the nasal drops, the reaction was nothing less than a miracle. If my parents and Dan hadn't been there to witness, I think I would have ended up over time discrediting my own account. It's just too wild. But it did happen, and I'm pretty excited about it.

Below is an interesting article about the chlorotoxin. The more you research it, the more anecdotal articles that you find. There's not a lot of empirical data out there, but that doesn't mean that it doesn't work.

Unicorns

I'm home safe from my whirlwind trip to NYC for my shot. I'm pooped, and plan to rest for a few days, but I wanted to share this amazing video sent by two of my friends (random that they both sent it). I like to think I'm a happiness outlier, one of the weirdos that's easily satisfied, or sees the good in most stuff. The thought that I may be that way makes me smile, so even if it's not necessarily true, I already got some endorphins from the concept so I guess that's something! Not that I'm so amazing, I just really enjoy being happy, and I'm very grateful that it seems to come pretty natural to me. 

Hope it makes you laugh as it did for me.

Tuesdays are my new favorite.

Just a little adorable picture to make you smile, curtesy of my sweet Annie. 

Hope it makes you as happy as it makes me! I'm off in a couple of hours, so I'd better keep doing last minute laundry. Clearly, I'm delaying my chores.

I don't know how business travelers do this. I'm exhausted just thinking about this trip. 

On a happy note, my blood glucose this morning was 76. I'm dropping back down to the target rate. Dan even cooked a few hard boiled eggs for me and packed celery along with cucumbers for snacks to keep me honest. It's not the perfect keto ratios, but it's better than dark chocolate covered almonds or quesadillas. :)

Ok, back to the grind. Enjoy your Tuesday!

Shot Six

Well, I have to start all over with ketosis again. I had a bit of a bender. Sometimes the pressure to eat so perfectly is overwhelming. To avoid all sugar, even fruit, and severely limit vegetable intake is incredibly trying. Seyfried's restrictions on diet, with glucose and ketones, are above and beyond restrictive. I try, and I fail, but I'll try again. 

The problem is that I can't seem to keep in ketosis for long periods of time. After a few weeks my willpower disappears. I don't know how to overcome my weakness. I wish it was simple. I wish I was better at this, stronger. 

Tomorrow I fly to NYC for another shot. Today I'll fast, tomorrow I'll stick with the ketogenic diet, and hopefully, by Wednesday, shot day, I will be back in ketosis again. I know it's important for me to be in ketosis during shot times. I need to deprive the tumor cells of food, to weaken them so that the virus shot can clean them up. That's the whole point about being in ketosis, when you're in ketosis you are starving the tumor of food. Oh well, what's done is done. All I can do is try again. 

Oddly, all I want to do is eat badly. My willpower is gone. Heaven help me. At times like this I wish I lived out in the country. Since I don't drive, I'd be stuck at the mercy of our pantry/fridge which purposely has nothing fun. 

The bender was absolutely worth it. Now the trick will be to stop. :) A photo from the weekend, happy birthday to Jules!

I'd better lock myself in the house...I'm  badly craving a chocolate chip cookie and coffee. No bueno. Is my willpower on vacation? Ugh.

Doctor Help

I need some advice. It's kind of laughable, but I don't have a general practitioner, or an internist. I have had such bad luck with doctors, they don't respect my research, and typically pooh-pooh my treatments/supplements/diets. I need a doctor for basic health, one that can monitor me, request blood work, and collaborate with my New York doctors. I'm looking for someone who is open minded who will respect me and will work as a teammate. If anyone has a great doctor in the Seattle area, I would be very grateful if you could give me their information.

DCA

Good morning friends. I can't believe next week is shot week again. Back to NYC for a quick 20 hours. Crazy! I've been so incredibly exhausted lately, too much summer fun with friends, and moving, and such. But the weather has been superb, and the sunshine has been intoxicating. It's impossible to nap, and I'm only getting about 7 hours of sleep a night (on a good night). I know I need more sleep, that I'm still recovering from October's brain surgery, but it's hard to zonk out when life feels so good. Not to mention the sun zaps all energy, but it's too hot to nap.

Here's my office for this morning. I'm hidden at a local cafe, behind a bamboo fence. Fun to change it up. I love living right in GL, able to walk a block to fun little spots. Since I don't drive, it's important for me to feel connected to the community. Note my editor, Emma

My day is another, full of research. I've been looking into adding DCA into my supplements. Apparently, it can help the mitochondria of cancer cells start to function properly. The mitochondria is the guy in the cell that does several things including programing apoptosis (cell death). That's the problem with cancer cells or damaged cells in general, they don't want to die. DCA also helps break the process of glycolysis for cancer energy, among other things. There are a few supplements that you need to take along with the DCA, like thiamine, and alpha lipoic acid. I would need to be careful about caffeine because it can potentiate the effects, but I think I could be careful and figure it all out. I've been reading up on DCA for the past few weeks. It seems like a nice addition to my treatments.

I'm off to focus on the DCA. Enjoy your day!

Dirty Little Thief

I can not believe this, but someone stole our bicycle from behind our home. The new home is in a high foot traffic area, and honestly, I didn't think much of it. But Danny and I put the bike behind our home, it was out of view, and some jerk took it. 

Unless, of course, a friend took it to fix the two flat tires - but I have a feeling that isn't the case. Dan had just grabbed the bike from his brother so that we could fix it up for me to use. I've only ridden a bike once in over three years because of the surgeries, and the seizures, and I was so excited to start back up. And in a blink it was gone. Dang it! Evil thief. Guess I don't have to buy a basket for the front.

I don't throw this card out there much, but it's pretty mean to steal a bike from a cancer patient. Even if they don't know it at the time. 

I keep picturing a tall, lanky dude on our bike cackling his head off as he wheels around Greenlake. Oh well. At least I've got my walking sticks to get me out. 

Clearly we're going to need to be really good about securing our things. Guess it's a good lesson.