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.

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.


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


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, 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...


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?!

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