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.

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

Good-Bye Anticonvulsant.

Sorry, I've been off my computer for a few days. My mind is mud. I can't think. I have had nothing to write because my brain is a slug. I have feelings and thoughts, somewhere in my gray hazy matter, but I can't connect to them. I can't even do more than basic sentences without needing a break.

Doctors don't even know what exactly causes seizures. They think it's an overactive brain (I'm simplifying here), therefore they prescribed me a drug that blocks or slows specific neurotransmitters. Now, I'm running on a portion of the firing that I usually have. My brain is half asleep. Think lobotomy.

Yesterday, it got so bad that I emailed my nurse and told her I want off the Dekopate. I asked for a schedule to decrease the medicine. It's too much. Also, over the weekend, I noticed a small rash on my right shoulder. In the Patient Advisory Leaflet (pharmacy info) under the Side Effects portion, it says, "Symptoms of a serious allergic reaction include: rash..." It continues to mention that the rash is a sign of severe liver problems. That sounds fun. All in all, I'm exhausted, mentally slow, my vision is blurry, my moods are horrible, my heart palpitates and I'm just a fraction of myself. I can't even write. I can't think.

So, today I did not take my morning anti-seizure pill. I emailed my nurse and reminded her that I want a schedule to decrease the dosage, and I mentioned the rash. 

I refuse to live like this. I might not be able to control some of the biggest things in my life; I can't drive to get to the grocery store or even a doctor's appointment. I also can't change the fact that I have the tumor nugget growing in my brain. But I can limit the bad drugs that ruin the quality of my life. It's one small step that can help me be happier.

On this pill I feel like I'm slipping away. I just want to get back to being me, even if that means a seizure here or there.

Divalproex Is The Devil

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).