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.