UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)

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.

No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.

No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.