Friday, December 27, 2013

Spreading Wings

Woke up this morning with Dan, and headed to the sleepy town of Oak Harbor. We were headed to Friday Harbor, anyway, so I figured I might as well cut the driving time. (For those of you not familiar, Oak Harbor is up north near FH.)

The town was quiet, traffic nice and slow, so I dropped off Dan and headed 1.2 miles by myself to a coffee shop. My first independent driving excursion! I was really nervous, but I stuck in the slow lane, maxing out under 35 mph. I had to keep myself in check, talking myself down from code yellow a few times, happily never hitting a code red. It's quite overwhelming assessing your surroundings, while floating around in a big metal thing with wheels. All the lights, and movement, all the while trying to navigate to a location I'd never been. I had everything mapped out, gotta love those smart phone mapping systems. By the time I pulled into my parking spot I was ready for a nap, or an oxygen mask.

I kept telling myself to breathe. I literally had to continuously remind myself. It was as if my body couldn't remember. When I had my first seizure, back in 2011, I was driving on a highway just next to a canyon with a river. I started to feel funny, and pulled over. Within seconds I witnessed my first out of body experience with my first Grand Mal, it was wild. Then I blacked out. It was a miracle that I pulled over. It is a miracle I survived. I don't know how I was able to recognize what I needed to do, but as I was driving today, all by myself, I started questioning if I needed to pull over. I wondered if my body was about to shut down, if I was overwhelming my mind, if it was about to short circuit. Gratefully, I made it. Now I can rest, reading my Canadian newspaper (way more fun to read about my neighbors above in the great white north), until Dan is through with work. 


Today was a huge step, and expectedly, I'm already pooped. Little by little, I'm determined to cautiously expand my independence. I don't want any setbacks, so I'm on the slow and steady path, but it's forward movement nonetheless. 

As for my Grams, due to her DNR, we extubated her on Christmas Eve (her CO2 levels were continuously worsening). The doctors told us to tell her goodbye, that within 5-24 hours she would do her final sleep. She shocked us all - except my mom who never wavered - by breathing on her own, and surviving her dismal CO2 levels. She continues to improve, even moving out of the surgical ICU yesterday, and into another section of the hospital, acute care. I keep telling my grandma what a badass she is, to which she responds with a giggle and a smile. Best sound/sight ever. All I wanted for her was to not be in pain, to carry out her final wishes, and enjoy her for as long as we're able. Apparently, her strong stalk is proving, her time here isn't over yet. Man what a relief! We all adore her so much. She has even been letting me coddle her a bit (as long as no one is looking). When it's just us I call her my baby bird. I get to feed her, and hold her hand, even tell her crazy, raunchy gossip - her favorite. 

It has been a wonderful Christmas, surprisingly, with the happiest of endings. 

Friday, December 20, 2013

Limiting Posts


So fun waking up to snow! Unfortunately, it makes it a bit tricky to get to grandma at Harborview for a visit. Apparently, the buses are on a snow route (whatever that means). I'm sure I can figure it out, though. I've been driving, with Dan, lately; been taking us to the gym (bypassing I5), driving to and from the grocery store, even using HWY 99 for three blocks. Even drove at night yesterday. Fastest I've driven was 40 miles per hour, but that was back in Friday Harbor where the biggest concern was hitting a deer.

I'm having so much fun getting back behind the wheel. I used to be terrified, paralyzed by the fear of hurting someone. But by waiting for over two and a half years, I think I'm ready. Knock on wood, but I haven't had a seizure since the first week of March. I am so very ready to get back to a normal life, pushing my limits to enjoy more independence. I'm more than ready to focus on things other than my brain tumor. I guess I just got kind of burnt out. Burnt out from talking about myself. I love helping people with their diagnosis, and that will never change, so please never hesitate to contact me - I just get disgusted by talking about myself all the time. I've gotten to the point where I feel like writing this blog makes me seem self-important. And that's embarrassing. I don't have anything more valuable to say than anyone else. I don't have any problems that are worse than anyone elses. In fact, I consider myself to be very, very lucky with my diagnosis, and in life. Shoot, I'm chugging along with 3.5 years under my belt. That's pretty fantastic! I'm surrounded by an amazingly supportive family, and truly the most fantastic friends on Earth, and I am deeply loved and cherished by my perfect mate, the love of my life. I'm capable, I'm improving, I'm strong, I'm happy.

I guess it's finally hitting me that what the doctors originally said, and how they treated me at the UW back in April of 2010, wasn't accurate. They made me feel like I was the fast track to die. That I was practically toast. Now, I'm realizing that this diagnosis of an infiltrating astrocytoma isn't an imminent death warrant, but instead just the reality of a life-long (whatever the duration) illness. This is a marathon, not a sprint. With the exciting concept of living several more years, possibly a decade (hey-oooo, why not, right?), I don't really want all of my time focusing on the most stressful aspect of my life. With that being said, my new idea is to do a post each Friday. That way, you guys have an update in case there are any changes, but I will also be able to focus my energies on getting back into a regular life. Now, it's possible I'll have things to say on days other than Fridays, and at that point I may toss in an extra post from time to time, but by limiting my responsibility to Fridays, it simplifies my life, and removes pressure from my mind.

I am deeply grateful for the continued support, it has been lovely to read the comments. They have been very helpful, informational, loving, kind, thought provoking, and I appreciate them all very much! I appreciate all of YOU very much. I guess I'm just sick of myself. Sick of focusing on MY problems. Sick of focusing on me. The world is both tiny, and gigantic, full of people with different lives, different accomplishments, different problems, different goals. I'm ready to look outward, to learn more from others, to think more about others, to look through a wider scope, to change gears. It's time for me to evolve, to further open my eyes. I don't know what that means for me, for my future, but it's an innate desire that I have to follow. It could be as simple as just learning, again, how to drive, to get back into running, and exercising, to garden, to find and follow my joys. As I listen to my soul's voice, to seek inner happiness, it will inevitably direct my choices, and introduce me to new avenues for me to help others, to find my purpose. I believe that in order for me to truly hear what is happening around me, the beautiful life we get to enjoy, I need to listen and stop talking about myself all the time. I want to absorb as much of this life as possible. It's just too wonderful, too fun, too gorgeous, and awe-inspiring. I want (and need) to breathe it all in, deep engulfing breaths.

The Infinity of NYC


Monday, December 16, 2013

Our Sassy Butterfly

Oh man, I fly out at 7:00 am tomorrow morning for the last immunotherapy shot of the year. 2013 has been, very possibly, the most busy twelve months of my life. Certainly, I have never flown so much.

This trip snuck up on me. Since Friday, our world has been turned upside down. My 81 year old grandmother, one of my best friends (she lives here in Seattle), was in a horrible car accident on Thursday. The hospital couldn't track down the family because my parents were getting a new supply of venom - no cell phones, no contact information. No one could get a hold of my aunt either (turns out she has been very ill with pneumonia). Randomly, a social worker at Harborview Medical Center called an old phone number for Courtney, my sister-in-law (it was in my grandma's old cell phone), and when the woman answered she knew how to get a hold of Kaal & Courtney. The whole story is insane, and impossible to explain without putting your mind into a spin.

The main point is that my grandma was in a horrible car accident. The medical team couldn't get anyone from the family for almost 24 hours. At the scene they had to immediately intubate her. She has a broken collar bone, a lacerated kidney, head lacerations, a split ear (needing several sutures), a deflated aorta, deep bruising on her left hand (causing an inability for her to use it - which is problematic because she's left handed) and several broken vertebrae. Courtney called Dan and I on Friday night, and we immediately ushered ourselves out of the second Hunger Games movie. It was surreal. It was the first time I actively told Dan that he could be erratic with his driving and that I wouldn't care if he got a ticket. My grams is one of the lights of my life, we talk on the phone for hours all the time, I love spending time with her, I admire her, I feel so fortunate to have her in my life. She's a sassy, naughty, hilarious, fiercely independent, kind, often bordering inappropriate (in the best way), little social butterfly. She is my girl, and the thought of her being in a hospital bed with no one to hold her hand makes me ill.

By the time the social worker got a hold of anyone in our family, the doctors had already been forced to make an executive decision for a 8-9 hour spinal surgery. When Dan and I arrived, Grams was still in surgery, so we waited, and waited. We were fortunate enough to be able to see her after she was transferred into her Surgical ICU room. In the meantime, Kaal (my brother), hopped on the first ferry out of Friday Harbor and headed to join us. For the next 24 hours, the only people in our family that we could reach were the four grandchildren. Within the next several hours, our cousins Chris and Matt had driven over from Ellensburg. After checking in on Grandma, the boys drove an hour to find my aunt (that's how we found out that she was sick, explaining the inability to reach her). They also helped track down the impounded car. I've never been more proud of my cousins, and brother.

It was difficult seeing my grandmother in such a battered state, but surprisingly, I held it together. I keep fielding compliments from Dan about my capabilities during this crazy whirlwind, which makes me feel pretty damn good. Truthfully, I'm just as surprised as everyone else. :) I'm a self proclaimed wuss when it comes to blood, broken bones, etc., so I'm very excited to learn that I am actually quite good in emergencies. I've been very fortunate that my only experience with hospitals has been as a patient - and as you all know, it has been extensive. I guess it would make sense that I would know a good deal about the necessary questions to ask, and how to handle things.

Happily, my parents came back to the states on Sunday morning at 1:00 am. I guess I should have mentioned this earlier, but this is my only grandparent. It's my mother's mother. They are intensely close. In fact, the women in our family are a very tight knit group. My mom is relieved to be back, to see her mother, and of course to be able to take care of all the finite details. I feel awful about my grandma's accident, and her pain, but I also feel terrible that my mother is just getting back from a stressful trip and to hit the ground running is a huge strain on her. She's handling it famously, though, I do have to throw that out there. Grams is still intubated, still in the Surgical ICU at Harborview. She has a long, long road ahead of her, and guaranteed we will be with her either in spirit, or just beside her as she heals.

It's nice to have mom and dad home, and safe, and I appreciate that they can be around to help Grams while I'm gone in NYC. I'm looking forward to getting back Wednesday night, and heading back to Harborview on either Thursday or Friday. (Depends on when I can convince Dan to agree I'm rested enough.) I've already decided to pack my Kindle with a billion books loaded on it, and my little notebook computer (just in case I need to handle things); I'm going to post up in a chair in her room. I'm bringing distractions so that I don't bother Grammie. With the breathing tube, she keeps getting agitated and trying to talk, which in turn causes coughing fits. My goal is to just chill, and be there. I remember really enjoying quiet company when I was in the hospital. Sometimes, it's just nice to know you're not alone.

Spring 2012

Friday, December 13, 2013

Changing Directions

Morning. I've been taking a much needed technology break. In fact, I even disabled my Facebook (for good - it was not a temporary decision). I feel like I have a deep need to simplify my life. Social media has never, really, made me feel better. It makes me feel voyeuristic, and often awkward. It's weird how we put the most mundane things out there, thinking it's somehow important. But my truth is that it ends up making me feel like I've wasted a small window of my life while the computer sucks out pieces of me. Pretty dramatic, I know, but whatever. I'm sure it's humorous for me to even say these things, since I'm a prime example of posting overly personal anecdotes on the blog. I have no retort for that. All I know is that I am feeling like nesting, crafting, cleaning, reading, and flying below the radar. I'd like to continue the blog, and by removing different avenues of energy diversions, it will syphon my efforts, simplifying my life. Now, I have to say that a lot of my friends do all the Facebooking, Instagraming, Tweeting, etc., and they love it. It just isn't for me. It gives me anxiety. It's weird, I would have thought, since I'm such a talker, that social media would be a fun outlet for me, but I've learned that it just isn't the case. Clearly, we're all different.

Tomorrow night my parents arrive from another trip to procure the venom. I have also begun taking dichloroacetate (DCA). I'm not taking heavy doses, starting very small at 4 mg/kg body weight. Low grade tumors aren't very glycolic, but I figure, even if it's only 10% effective, it can still help me for the times I don't eat properly. If you're not familiar with DCA, I recommend doing a search for University of Alberta and Dr Evengelos Michelakis. I haven't been eating healthily these days, probably for weeks. In fact, I ate pizza last night. Delicious. I have no self control these days. I just need to be human sometimes, to not have to over analyze, not have to measure, and time, and schedule all of my pills, and venom applications. It's nice to be able to just live. People probably can't quite absorb my usual routine, it's nuts. To live like that is exhausting. Just as a refresher, this is what I'm supposed to be doing each day.....


At least my sweet Jess Abu came last weekend. We had a glorious run around Lake Union in the 22 degree sunshine. She was never a runner before, but in the past year or so she caught the bug. Running is one of my favorite things, probably tied with reading, so to be able to run with a friend is truly the most fun I could have. My sweet buddy is living apart from her husband, who is still residing in Abu Dhabi, as she is completing her nursing degree at John Hopkins in Maryland. Jess and I met back in Texas, she also went to TCU. Jess, having walked through this brain tumor journey with me (you'll remember she shaved her head with me when I was first diagnosed), decided to become a nurse after finding her passion to help others, with me; I was her first patient! Humbling to think that my diagnosis changed her career. It's definitely amazing, and it inspires me. She inspires me. It makes me think big, to remember that life is what you make of it. To keep dreaming. To continue to strive toward your goals. To not be afraid of a change in direction.

Here's a picture of us in front of our little home, just before our seven mile run. It was a spectacular day. Days like that are what I live for.





Friday, December 6, 2013

Decidedly North

I am delightfully exhausted. Texas was everything we could have dreamed, and more. Since we've been home, I've been indulging myself by working on craft projects, deep cleaning the home, and just doing whatever I want (which, truthfully, consists of load after load of laundry). There's only so much time in the day, and by taking time off from the blog I've been able to spend my energy on less emotional things like taking the bus to Target. It sounds silly, but just taking a bus and shopping can be very taxing on my body. There was a time when I couldn't even handle box stores because of the loud sounds, flux of people, and obnoxiously bright florescent lights, it was seizure inducing.

This blog has been such an amazing tool. It has helped me process this experience, recover from surgeries by practicing my language and typing skills, and it has brought me friends, both old and new. My biggest joy, however, has been helping consult with brain tumor fighters. On average I talk to 3-5 different people (usually newly diagnosed) over the phone per week. The phone calls range from 1.5 hours to 3 hours. There is so much to know when dealing with the horrible diagnosis of a brain tumor, and I love sharing everything I know. I wish we would have had someone to teach us the ropes, to explain the different types of surgeries, the scans, the difference between a neurosurgeon and a great neurosurgeon. When you're newly diagnosed you don't know that there are life changing differences between brain centers.

I am very grateful for every person who contacts me about their diagnosis. It makes me feel useful, helpful, that I'm possibly preventing one less complication, or extending their life in some cases. The difference between a complete resection and a partial is most definitely a no-brainer. No pun intended. You always want to get the bulk, or all of the tumor out, and sometimes one surgeon can get it all out when most other surgeons aren't comfortable attempting. Anyway, I won't go into all of it here, but just know that there are always tricks, and things to know, from people that have gone before us. I have learned so much from others, and all I want to do is make other tumor fighter's lives easier. Due to all of the phone consultations, I end up feeling first, energized, then exhausted. I wouldn't change it, though. I guess the only tricky part is that it does make me less able to write on the blog. I can only deal with so much emotionally charged stuff in a day.

The wonderful news, though, is that I don't have much to write about when discussing my tumor. At this point I'm just trying to remain healthy, and focus on helping others navigate this crazy brain tumor world. 

Here's my latest craft project:

Now I just need to change my last name...

And for some of my favorite TX photos:






I heard a quote the other day, "Would you rather be a shooting star or the North Star?" Contradicting in nature. Equally powerful. When I was younger, or more accurately, before the diagnosis, I held the stance that I would rather be a shooting star, an asteroid, a comet. To live life loudly, without abandon, with no regrets. But now, in this life, my tumor life, I yearn for the life of the North Star. I work toward slow and steady, reliable, longevity, dependability. When faced with death, literally, my own mortality, it changes how I view life, what I cherish. I don't want to just be Dan's shooting star, a blip, a hot flash. I would give anything to have a long, happy life as Dan's North Star, as he is mine. 

Wednesday, November 27, 2013

Texas For Thanksgiving

Tomorrow morning, Dan and I will be on an early flight to Fort Worth, Texas. Yay!!!

Back in July, you may remember that my MRI scan came up with an area of concern. Dr L and the UCLA team wanted me to fly back to LA for a Dopa PET scan to assess the situation, but I really wanted to give the chlorotoxin some time to do its' thing. The doctors said it would be fine to wait until my usually scheduled three month MRI, placing all of the testing out until October. In the meantime I was very scared. I felt certain that the area of growth was truly tumor, and at the time the doctors warned me that if it was in fact tumor they would be recommending further treatment (like radiation or chemo).

This brings me to one of my life dreams. I've never considered creating a "bucket list" or anything of that nature, but there is one thing that I have always wanted to do with Dan: take him to Fort Worth to check out the city, show him where I came into adulthood, and most of all get back to TCU for a football game. The problem is that we're always on such a short time span. It's always three months by three months by three months, never knowing if I'm on the cusp of further treatment. Flash back to July, Jobi and her husband visited the NW for her birthday (you'll remember she's one of my college roommates). As women do, Jobi and I, later, devised a master plan for Dan and I to visit her turf. I talked to Dan and we decided that even if we were doing chemo we could handle the trip. (The chemo for gliomas is uniformly pills that you administer yourself.) Thankfully, I'm not doing chemo or radiation - one more thing to celebrate!

Flash forward to tomorrow, in the wee hours Dan and I will hop on an Alaska Air flight. We will make our way to the lone star state. We will head to the ranch and celebrate with a friend's Thanksgiving! Jobi and I are going to cook up a storm; the boys are doing some sort of delicious deep fried turkey (yum!). We will ride around the wild Texas ranch, and probably shoot some guns - don't worry, probably not at the same time (my friend Meghan MF, and all of my anti-gun friends, are vomiting in their mouths right now). It's going to be the best throwback to my college days! Then on Saturday, we will head to the TCU vs Baylor football game, which also just happens to be the final home game. I. AM. SO. EXCITED.

I haven't been back to TCU since 2004, for Jess Abu's graduation. I have so many wonderful, hilarious, memories from college. To mentally prepare for the trip, I just pulled out some old photos. Here's the first picture I ever took on the first day I started living away from my parents. I was sitting on the front steps of Shirley dorm.


Here's a few random photos from my college days. Looking back makes me very grateful for the opportunity to attend a college half the country away. To go to a state where I knew no one was definitely a challenge, but it helped me grow, and evolve, and learn, and observe (TX seriously is like a different country), and make new friends, and work my way into an adulthood. I wish I would have taken more pictures, but what I do have came from those old disposable cameras, so I'm just lucky I have any photos at all. Aaaah, the days before camera phones. Actually, at this point of my life I didn't even have a cell phone. I remember being a little bit proud of that fact. Of course, I eventually caved. :)






Aaaaaand, for the original "photo bomb".


Monday, November 25, 2013

A Free Range Life

First, I need to share that there is a new link to Astroctyoma Options on the blog (upper left hand corner). The tricky part is that you won't see it if you typically read the posts on a cell phone. Unfortunately, the blog has a different format that shows up when when accessing it mobile-y. I don't know how many people read the blog from their phones, and I don't know how to combat that issue so that everyone can see the links. If you read the blog from a typical computer you will see the link.

Also, I would like to share that Stephen worked with his fabulously talented brother to create Astrocytoma Options. Stephen did the verbiage, and his brother Michael did all of the website design. Pretty smart dudes. Michael clearly has an eye for design, and although I've never met him or corresponded, after checking out his design website, I immediately fell in love with his honesty, and humor. Not to mention his aesthetic. It looks like he's currently taking on new clients, feel free to check his design company Free Range Designs. His website is so cool that you'll enjoy surfing his site even if you aren't in the market for web design. Actually, he's so good that it will make you want to have your own website, even if you don't have anything to promote. He's that good.

On another note I have some super sweet news. I was contacted by a neighbor, here in Green Lake. The gentleman saw the Komo 4 News segment on our dear stolen Buddha, and brought his over. I now have a happy little Buddha to join me on my journey. I am continuously reminded by how wonderful people are. Even just today I had a comment on the old Buddha blog post with a wonderful family who was offering their Buddha. It's incredibly kind how many people have cared so much about my silly little theft-ipsode.

Here's a photo of our newly beloved Buddha: He's a cutie!


He seems a bit more pensive than my last Buddha, so maybe it will spur more depth in my thoughts. 

Also, from the weekend I'm sharing a fun photo from Saturday night. The colors, the scenery, the friends, it's just fun. Dan had his hands full! What a chap to escort us crazies around town. Not to mention he's a pretty great photographer.


Also, to sweet Maleka, thank you for the gift certificate to get my hair done. I actually have a hair-do now! It's so fun!! Gone are the days of my reverse mohawk! Thank you, thank you, thank you. I appreciate you very much. 

Thursday, November 21, 2013

Clearing Cobwebs

I am having so much fun this morning! I've been reading through my buddy's new website. He's been working on it for months, and it is FABULOUS. It helps us brain tumor fighters make sense of research studies, explaining things for us non-scientific minded people. I'm over simplifying, of course, but the website is just crazy exciting. It's so informative, concise, and helpful.

My buddy Stephen, with his new breakthrough website, is always helping me understand things. We bounce ideas and theories, it's a lot of fun. On top of researching, our email conversations often remind me of things that I've forgotten. One of the latest, exceedingly exciting helpful details that had skipped my mind, is about diet. I forgot about one of the first research studies I conquered dealing with calorically restricted diets. It dealt specifically with the standard American diet, and the ketogenic diet. It then went into restriction of both and the effect on controlling cancer cell growth/brain tumor growth.

I have been constantly beating myself up because I am not capable of staying on the restricted ketogenic diet. Rereading through it, though, reminded me that technically, restricting the standard American diet actually led to lower tumor weights (as opposed to the restricted ketogenic). Of course, the study was conducted with mice - not humans, but that's mostly how they're deducing the effectiveness of the KD-R. Here's a graph from the study, if you click HERE or on the graph itself, you can read the whole thing.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2394295/pdf/89-6601269a.pdf

Sometimes I get caught up in a concept, forgetting other contradicting info that I've read. I feel so relieved to be able to drink my green smoothies in peace, without guilt. All I want to do is make the best decisions for my health, but sometimes all of the info coming into my mind gets jumbled, and disorganized. I remember choosing the ketogenic diet because of the seizure activity in my brain, I saw the restricted ketogenic diet as a tool to hit two birds with one stone. However, as you know, the restricted ketogenic diet makes me miserable. My body craves veggies. I love them.

So finally, I have come full circle, I am back to green smoothie heaven. And I don't even have to feel bad about it. And as it goes, restricting calories is a lot easier to do when you can fill yourself with lots of big leafy greens. To celebrate I just blended up an old trusty favorite for brunch.

Old Trusty
2 large kale leaves - stems removed
1 small frozen unripe banana
water to the consistency you prefer
1 tablespoon orange flavored fish oil

Tuesday, November 19, 2013

"Set your heart on doing good." - Buddha

Afternoon folks, thank you for all of the kindness over the Buddha bandits. It seems like everyone googled and found the news piece about the stolen gift, but I'll insert it at the bottom of the post for those who are hoping I'll share.

I still feel like a goober for this little goofy thing becoming such a big thing. I get the irony of me being upset over a possession - particularly a Buddha, but what can I say, I'm human. Truthfully, I'll always miss our sweet Buddha, and I did hope that maybe he would come back home to us, but it's okay that he hasn't. I do peer over the couch, through the window, and hope to see the back of his head, but oh well.

On another note, aside from Buddhagate, Dan, Amy (my high school buddy - and NYC road warrior with me for a shot), and I got the chance to support Movember by running a 5k together on Saturday. It was such a blast! The annual run is called the Mustache Dache, and it raises awareness and funds for men's health. Our buddy Derrick (who is heavy into Movember), helped us join in. We've really been buckling our financial belt straps - or is it boot straps - and when Derrick heard that, he approached us with a comped entrance fee. He's so great! It was the first race I've done in two years, (if I'm remembering correctly), and since I love to run, and I love supporting healthy endeavors, it was truly the most fun I could imagine for a Saturday morning. The whole day was fabulous. Dan and I can't wait to return again next year with more secure finances (by way of fewer treatments, and less travel to doctors - cause I'll be a healthy harbor seal), more friends, and some exciting costumes. Dan even said he's going to start growing his man hair the day after my birthday in August. I can't wait!


Mustaches, costumes (There really were some great ones: Mario, Luigi, Selleck, Hogan.), and men's health are things I can really get behind!

As promised, here's the video about the Buddha Burglars from Komo 4 News (click to view). Life goes on, and I keep learning more and more about Buddha's great wisdom. Here are a few of my favorite quotes:

“The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly.”
― Guatama Buddha

"In the end these things matter most: How well did you love? How fully did you live? How deeply did you let go?"
― Guatama Buddha


Friday, November 15, 2013

Komo 4 News Interview

For those who know my mom, you know she's a momma bear. I've been absolutely exhausted lately, so I turned off my alarms and decided to sleep in this morning. When I woke up at 11:00 am (whoah!), I had missed 9 phone calls. Eek! I panicked for a second, then soon found out that my mom had contacted Komo 4 News with the story of my missing Buddha. By 12:15 pm I was being interviewed by Matt Markovich (what an amazing guy). The piece will air tonight at 5:15 pm. Being as self absorbed as I am, I'm terrified. I'm sure I'll look and sound like a complete goober. Oh well. My hope is that somehow it will come across that you never know what people are going through. A silly prank, or theft, effects people. Maybe, just maybe, by getting the word out my sweet Buddha will reappear.



One more thing, I would have rather donated my sweet Buddha to a cancer fighter than have him holed up at someone's place under the cloak of darkness. He is to be loved, and cherished, and to spread happiness and joy. If I would have known that he would be stolen, I would have graciously passed him on to someone who needed him more. If we never see our Buddha again, all I can hope is that he continues to spread love, joy, happiness, and kindness in the hearts of the thieves.

Thursday, November 14, 2013

Letting Go

After feeling really bummed, and violated after the thievery, I thought to myself, what would Buddha say? So I looked it up. And here's what he told me, "You only lose what you cling to."

Man that guy was deep. My panic is gone, and my heart feels better. I feel that those thieves needed some Buddha in their lives. I wish they wouldn't have taken mine, but maybe Buddha will warm their hearts and it will effectively be the last crime they commit. 


It's always violating when people steal your things, especially from your home. The bad guys have the advantage of knowing where we live, and it makes me feel unsafe. All I can do is let go and not let this event bring me down. There is definitely some sadness sitting heavy, but ultimately, people are going to do what they do. It is out of my control.

Thievery

It's not even noon and I've cried three times. Once to Dan, once to my parents, and once to my friend Tim who works at my local PCC. It's embarassing, but I'm hurt, and so sad. Someone stole my lovely, lucky, hope-inducing Buddha. My father bought the stone carved Buddha back around 2006. It was a reward for my hard work (I used to work for my parents as a purchasing agent). I had seen it while working at a trade show for my parents. My dad noticed how much I loved it so he and my mom surprised me with the gift, hauling it from Tucson, back to Wenatchee. I have since moved 5 times, each time hauling the 150-200 lb statue each time. Buddha has been my vision of kindness, of triumph in times of fear and challenge. I've rubbed his belly more times than I could remember. I always give him a rub or a kiss when I head out for surgeries or treatments. When we first moved into our current rental we debated on whether or not to place him inside the house or out in the garden. Our house is a triangle and it is surrounded on two sides by sidewalks - not much for privacy, or security for that matter. We finally settled on a spot just to the left of our front door, next to a waterproof container storing doggie treats for puppies walking by. I had been working on a sign, creating a little necklace for Buddha that says, "Budda says doggie treats are good!" Then underneath, in small cursive it says. "Please take one. Enjoy."

Here's an old photo of my sweet Buddha...

See the planter just in front of sweet Buddha? They took that too. I'll never get to use that doggie treat sign. Guess I'll toss it in the trash. The thing is, I'm not obsessed with Buddas. I'm in love with THAT Buddha. It represented the love from my mom and my dad, and although it is just a thing, a possession, it had deep meaning. I feel like a chunk of my heart was stolen. It's like getting kicked in the gut. They stole from right in front of our house, the Buddha was just inches from our window. It's creepy, and sad.



I don't understand how people take other people's stuff. How can they feel good about themselves? I feel very violated, and disappointed.

Yesterday I was elated, very excited because I was able to jog over to Eastlake and enjoy lunch with Allison Posenjack from Friday Harbor. As I was jogging I started thinking about how small a human life's blip is in the big scheme of things. It made me contemplate what the purpose of my life is, I wondered what more I could do to help make the world a better place, to help others. Then, at lunch I was telling Allison that I truly believe that people are innately good. Sure there are a few bad nuts out there, but those are few and far between. Ironically, and unfortunately, we've got a couple of rotten nuts that live right near us.

Lunch with Allison (her husband is battling ALS)

The worst part about the whole thing is that it happened during the afternoon, and I was right there. I could hear the people talking about the sweet Buddha. People are always sticking their heads around in our garden because we're literally right on the sidewalk, but it happens so often that I just let people oogle things and I go about my business. I didn't think they were taking anything!! I just can't believe it. They were walking by and just decided to lift it. Clearly they live around here. That just makes me sick. And each time they walk by our home they will giggle and think, "Hey, that's where we got our awesome Buddha. Ha!!" Jerks.


Thursday, November 7, 2013

Balance

Sorry I was such a crank, such a downer the other day. The food and exercise parts of this whole tumor thing is very much overwhelming (as I'm sure you could see). It often seems as if I need to vent on the blog in order to get my mind right. One of the things that I determined is that running purifies my soul. It allows my mind to filter thoughts, emotions, until they are clean. Running keeps me mentally stable, and positive, and happy in a way that nothing else can. There are a lot of satisfying things in life, but not much more makes me feel accomplished, and grounded, and alive. So, today, even though it was pouring rain and wind whipped me all over the place, I rewarded myself with two runs.


Granted I didn't run fast. It wasn't about that. As the wind whipped my face, I lifted my head to the sky; I closed my eyes and let the rain wash me of my fears. My heart swelled and happiness overwhelmed me nearly pushing me into relieved tears.

This is the time when I should be enjoying myself, I mean shoot - they don't even know if I have conclusive tumor tissue. Now is the time to enjoy those runs, to recharge and reboot.

It's hard to know when to hit the tumor hard, or when to give a little slack, but I think I'm finding a logical, happy medium.

I've never been accused of being trendy, gotta love my lucky TCU socks though!

Tuesday, November 5, 2013

An Un-Know It All

You know what encourages eating disorders more than else? Researching brain tumors. The more I know, the more I wish I didn't know. Here are some of the things that I've learned that continue, like a hamster wheel, through my brain:

1. If I eat vegetables without some protein or fat, my blood glucose will spike just like eating fruit or candy or other carb laden items. (According to my nutritionist.) So, even if I eat salads all day, my circulating blood glucose will be high, thus feeding the brain tumor.

2. Like with the veggies, if I eat a piece of fruit without a little protein and fat, my blood glucose will spike like I've eaten a candy or other carby food.

3. If I eat more than (approx - depending on your body size) 4 ounces of protein at once, the excess is converted into glucose thereby spiking my blood glucose. 

4. If my heart rate gets going too much, it spikes my blood glucose. (Which for me is anything above walking.)

5. There are carbs in supplements. When you're taking around a hundred pills a day, the supplements are a food group in and of themselves. So, do I skip vegetables so that I can take my pills? I can only have 20 g of carbs a day to stay in ketosis. My supplement plan is to keep my copper levels low, glucose low, to lower inflammation and so many other things. My nutritionist is trying to keep my body in a healthy homeostasis, creating an environment where cancer can not grow. Which is more important, pills or veggies? 

6. So, skip the whole supplement issue, and focus on the fact that if I eat more than 20 grams of carbs in a day (even if it's purely vegetable carbs - no breads or crackers), I will not be in ketosis. If I'm not in ketosis, my circulating blood glucose is high enough to be feeding the tumor. In order for me, personally, to be in ketosis and stop the growth of the tumor this is what I can eat in a day:

20 g Carb = 3.2 cups raw broccoli
63 g Protein = 2 chicken breasts (5.5 ounces each)
91 g Fat = 7.2 tablespoons of coconut oil

Clearly, the above daily diet is not very rounded, I'm just trying to make it easy to gain perspective, and understand the difficulty of the Restricted Ketogenic Diet, as Professor Seyfried recommends for brain tumor fighters.

Let's see...so, now that I know what I'm allowed to eat to be successful, it's just a job of staying on target. The problem, is that even though I know what I need to do to stop tumor growth, I also know, from experience, that it sucks. It's so regimented, there are so many rules, and it takes a lot of fun out of my life. I can no longer just enjoy an apple for the sake of its' beauty, and flavor, and crunch. Now I think about how the sweetness is surging through my body, how that body is pumping insulin to try and lower my blood sugar, that the sugar remaining in my veins is swimming up toward my brain, and into my resection area, that the invisible cancer cells (which the doctors have so thoroughly reminded me, still exist), are gorging on the sugar from that tartly delicious apple. They're getting fatter, and dividing into little cell babies. I can't un-know these things, and it is such a disappointment.

Here I am, in quasi-stable mode, feeling as if I'm teetering on the brink of success and failure. Every minute of every day I analyze, and assess my food choices, my exercise choices, my supplements - do I skip my pills for breakfast because I don't feel like eating? (I need to take most of my pills with food.) According to Seyfried, the less you eat (generally speaking), the less your blood glucose increases, the less you feed the tumor. So, basically, each time you skip a meal you're doing something right. In essence, you're being "healthy", but at the same time, it's just sanctioned anorexia.

It is crazy that I feel bad if I go for a jog, or if I do cardio, or lift weights, in the back of my mind I (always) know that I'm increasing my blood glucose, that I'm feeding tumor growth, that I am slowly killing myself. What is good for me is not the same for what's good for most. (According to research, anyway.) I'm in this weird world of trying to outsmart a brain tumor and it's strategic, and complicated, and usually counter intuitive. 

I wish I never knew about blood glucose and how tricky it is, how fickle. I'm not a person that is meant to live like this. It's not in my constitution. I know a woman who has been on the restricted ketogenic diet for years due to her inoperable brain stem tumor. She has never over-indulged, indulged a little, but never been kicked out of ketosis. She has, however, been known to chew "cheat" foods, then spit them out before she swallows so that she won't ingest the carb loads. Technically, I would consider that an eating disorder, but is it? Sure, probably, by normal standards it is, however it is keeping her alive, so how do you rationalize saying it's unhealthy? I can't. But, it's confusing.

Now, before anyone says for me to lighten up, or just take it easy, to not be so hard on myself, please spare yourself. I know that. I work very hard at taking it easy (don't worry, I can hear how absurd I sound), I distract myself, I change the thoughts in my mind, but always they seep back in. My life, living on this Earth, is very important to me. I don't know how I can ease-up, to lighten-up when the stakes are so high. I also realize how stupid it is, this juxtaposition of being so regimented, knowing that living in fear, in fight-or-flight mode, keeps cortisol levels high, your immune system low, and glucose high. What I'm doing by over-analyzing things is killing me just as everything from that list above. So what do I do? Do I just give up and enjoy myself? Do I just say forget it? Do I try to live my best in moderation? Moderation is so boring. Ugh. Just thinking about living a life of moderation feels like purgatory. No one ever used "moderate" to describe passion, taste, or really anything I would want to experience. I don't moderately love Dan. I don't enjoy moderate meals. I don't want a moderate vacation.

Sorry I fell into such a tangent. I guess, as I keep repeating, I just wish I could un-know things. I feel it would make my life much more enjoyable, happier, more carefree. Clearly, I'm still trying to navigate the daily reality of living with a brain tumor hovering over my head - doctors may not be sure if there's one in there or not right now, but there's definitely some hovering going on. I just want to live my life, and be happy, but of course, it's never that easy. Ultimately, constantly living in fear, being flippant, or carefree won't stop the need for these...

2010
2012



Friday, November 1, 2013

Blazing Paths

Good morning friends. Unfortunately, with my previous post, I upset a patient of Dr Eric Holland. I had intended to expand on the lecture, but needed a rest, so here it is a couple of days late. In the meantime, before I explain, I want to say that I'm sorry for the times that I upset people. This blog is my place to vent, to share, to emote, to dream, and to live my life out loud. People don't have to agree with things that I say, they don't have to like me, but I'm going to write my perceptions, my truth, life how it feels from my point of view. I get a visceral reaction when I upset others. Maybe it's genetic, both of my parents were raised Catholic, perhaps the Catholic guilt that I've heard so much about is an innate river flowing through my veins. Or, perhaps, it's just the fact that I don't like to upset others. I want to please, and I hate hurting other people's feelings. Whatever it is, because we don't all have the same views, or experiences, our opinions differ. I know that not everyone likes me, and I know that I offend people sometimes with what I write. I also know that a lot of people think some of my choices have been absolutely nuts, stupid even. But, you know what, this life is mine, and I'm just trying to do the best that I can. I write things as I experience them, and that's all I can do. There have been times that I have not written what I feel about doctors, or people, or I have not named them, but I have since changed. These doctors make mind-blowing amounts of money, and get accolade after accolade. They have amazing amounts of prestige and power, but they're not perfect, and in my mind, they should not protected or immune to reviews. If I have a bad experience with a doctor, I'm going to say it, granted that doesn't mean they're bad people, or bad at their job. For the few people that choose to read this blog, I'm sure you're all discerning folks capable of reading my opinion/experience with a grain of salt.

Now, on to the meat of the lecture. Dr Holland's brain child, here in Seattle is a great idea. Just as a note, every time a hospital removes a brain tumor, they keep a portion in their possession, in their "tumor bank". They use it for their own research purposes. In fact, Dr Holland's team even has my tumor tissue (nine blocks saved in paraffin), from my first tumor resection at the UW. Dr Holland's team has tumor tissue from the banks of University of Washington, Children's Hospital, and Fred Hutchinson.

The idea is to run the DNA of each tumor, and put them into their database. Then, by cross-referencing the tumor's unique chromosomal abnormalities, mutations, etc., the hospital can see what cases work best with what treatments. It's a fabulous idea! So, if you come in with a brain tumor, and they remove it, when the pathology comes back, they'll have a database as a reference to pick the right treatment for the DNA of your tumor. What I DON'T like is that they are only recording information about surgery, radiation, and chemotherapy for each case. The tumor fighters that I know are not giving up and just going with standard of care (because it so rarely works). They are doing supplements, off label drugs, experimental drugs, synthetic vitamins in high doses, diet, immunotherapies, hyperthermia, novocure, and all kinds of other stuff. And guess what, these things all have an impact on your health and survival. They can extend our lives. All of the treatments that I just listed have been used in research studies or clinical trials. Each one only works for a portion of people, but that's true with all treatments - including radiation & chemo. My problem with Dr Holland's database, is that it's incomplete and misleading. One example, for the people with brain tumors taking Valcyte (after radiation & chemo), the majority will live much longer than if they only did radiation and chemo, but in the database, the extended life will be attributed to the standard of care, not Valcyte, because it wouldn't be entered into the database (as it's an off-label use, not a standard treatment option). To me, if your data is incomplete, your results are compromised, therefore invalid. My point is that to have an accurate database you have to include all of the variables. It's dangerous when people don't have accurate information to form decisions, especially with treatments, and survival.

Another problem with the database, Dr Holland did not know who would have access to it. He kind of giggled and said, "Well, wow. That's a good question. I don't know." How can he not know that? I would think that the answer to that question would have been in any normal business plan. You don't start asking for millions of dollars without discussing (even privately) who will get access to the final product. Either they don't want to be nailed down with their answer, or they're unsure. As a tumor fighter, I want to know that answer. Will I ever get access? And under what circumstance? Would I have to undergo their protocol?

I said that I would consider their care in a decade or half at the soonest. The reason is because Dr Holland specifically said that it would take about a minimum of 5 years to implement his database. So, in the meantime, unless a new treatment is approved by the FDA and they start to offer it at the Alvord center, I don't think they'll have anything new to offer me. I'm a fair-weather fan with my health care, I go to who's winning, who has the newest research, the newest treatments, the best survival outcomes, etc. From what I have experienced, Seattle isn't quite there for brain tumor treatments. Man will I love it if that changes, though. It would be glorious!

Let's see, what else did I brush over from that post...maybe the money comment? Money, money, money, want, want, want...there's no denying that cancer is expensive, and when I hear numbers it just makes me sick. Dr Holland said that the combined amounts of money brought in by MD Anderson, and Memorial Sloan-Kettering is 300 BILLION dollars a year. Wow. All that money, and even HE said that we haven't made a dent in survival rates from brain tumors since back in the 60's. And treatments haven't changed that much since the 60's. How can he not see that this system is broken? Sometimes I feel like we are trying to polish a turd.

Now, about Dr Holland, he is truly exceedingly dedicated, and very, very intelligent, and what I'm saying doesn't diminish the fact that he's saved (I'm guessing) several thousand lives. I just don't agree with part of his plan. I wish it was more encompassing. It's so close, and could do so much good. But if he doesn't adapt to include all of the other variables in the database, it will be misleading. For example, I'm going to be a dot and a reference on this database. They will use me for someone else's treatment in 5-10 years. It will show that I only had surgery. They will show that I'm still alive and healthy. However, I am doing all kinds of things to make that possible. When they talk to the new patient they might say, "Well, your tumor, based off of pathology, is the most similar to this one P19r087x (I just made that up - which is representing me). So we could just wait and see how things go." Then they'll say to that patient just as they did to me when I asked what I could do to not have the tumor come back, "Nothing, go out and enjoy your life." Me: "What about diet?" Them: "Honey, you eat whatever you want. Ice cream, just go for it." When I'm still alive in 10 years, I want other tumor fighters to know that it's because I made informed decisions, it was not luck (well, maybe some luck). People do not have to do any of the things that I'm doing, but if they're going to be using my case as an example for comparison, I want the patient to have the full picture. That way they can make their own choices on how to move forward.

Okay, that was the most exhausting post. I think my eyes are crossed, and my right hand is definitely numb, and pushing uselessness. Time to find the cat, lay down and read my fluffy novel under our faux fur blanket.

Afterthought: All I want to do is help brain tumor fighters have the opportunity to make informed decisions about their care, and their health. Sometimes that means I don't agree with doctors, or institutions, or techniques, or ideology, and sometimes that means that other brain tumor fighters don't agree with me. And that's okay. We all have to blaze our own paths. Either way, I feel honored to walk along side my brain tumor fighters. It's a heavy burden to carry, and I'm constantly amazed by all of your strength.

PS Somebody's ready for Christmas...see the baldy?!

Tuesday, October 29, 2013

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.




Monday, October 28, 2013

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!

Thursday, October 24, 2013

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. 

Wednesday, October 23, 2013

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. 

Tuesday, October 22, 2013

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.

Saturday, October 19, 2013

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)


Tuesday, October 15, 2013

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.

Sunday, October 13, 2013

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.

Monday, October 7, 2013

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.

Sunday, October 6, 2013

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.

Friday, October 4, 2013

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.

Thursday, October 3, 2013

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 

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