Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):

• You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
• You want a neurosurgeon that performs 300+ brain tumor resections a year.
• You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
• Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
• After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
• What is a fMRI? Click for information.
• If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

Cue The Music

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

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

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

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