Showing posts with label national brain tumor society. Show all posts
Showing posts with label national brain tumor society. Show all posts

7.29.2014

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.


7.25.2011

New Treadmill

Happy Monday to you all! My two and a half year old niece called me her "bestie" (best friend for those who aren't down with the lingo) this weekend. Pretty fantastic! I should probably mention the minor detail that she was just repeating after me. But, in my defense, I didn't ask her to repeat it, she repeated after me all on her own. Obviously, I'm her favorite friend.

Although most of the weekend was perfect, there was a point on Saturday morning when I thought I was having an aura (the moment just before a seizure hits). With that realization, my pulse shot through the roof, I dizzily got up from the table, went for my purse and shoved my pill bottle at my brother, panicked because I couldn't get it open, shaking my hands at my sides. I swallowed my Ativan (prescribed for just the occasion), and headed for a bedroom where it was quiet and I could lay down. I took deep breaths until the feeling passed.

After the Ativan kicked in I felt normal again. It's hard to know when a feeling is normal or when it's a physical preposition to a seizure. I've decided that I can push myself when I have other people around, but when I'm alone I should rest and play it safe. If I feel dizzy or light headed while alone, I drink extra water and close my eyes for a few moments. As Danny says, it will take time for me to know my limits.

Fun news...since I can no longer drive, we bought me a treadmill on super crazy cheap sale and my brother, father, Danny and I assembled it in my living room. I'm excited to keep up with my walking and running. In fact, I read an article from the National Brain Tumor Society that brain tumor diagnoses who work out regularly live much longer (just like you regular non-terminal illness people - I guess exercise is great to increase the lifespan of all. That should have been a no-brainer) than brain tumor patients who are sedentary. I live in an unsavory location for a lone female, and since Danny will be in training between Seattle and Portland until November, I now have the ability to walk/run in my living room. Cool! Now, even today after my nap, I was able to watch my favorite DVR'd show Extreme Makeover Weight Loss Edition with Chris Powell as I walked on the treadmill. It was fantastic! I even grabbed two cans of garbanzo beans for my hands and did arm exercises. This is going to be a great new thing!
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