Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

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.

Water-Only Fast = Seizures

Oh fudgeknuckles. I did it again. The thing is, you'd think I'd remember that I have stress-induced seizures, and here I was doing a several day water-only fast. And the whole point of a fast is to stress the body so that it cleans out damaged cells. Stress, the word is written directly in the description. Fool. I always think I can handle more than I can. But the payoff (a completely regenerated immune system) was so great that I had convinced myself that I could handle it. I believed that I could make it three days and that it would be great. 

But that's not what happened. About two hours after that last post, I was waiting for the iron to heat up to press Dan's shirts, vacuuming the house to kill time, when I started to feel off. I told myself that everyone doing a water-only fast feels off, but I still made my way to the kitchen to eat the second half of my papaya. What I noticed first, was that my right hand and arm were icy cold, and I was having a hard time spooning the papaya meat. I thought to myself that I needed more fruit, that I didn't feel well but needed something gentle on my stomach, but we didn't have anymore. One trick from my doctors is to eat something sweet when you're about to have a seizure, I guess it's supposed to help slow the onset, or perhaps even lessen the intensity. When I have my stress-induced seizures I'm typically hypoglycemic (another reason that I've come to reason why I probably shouldn't fast). I've checked my blood glucose levels a few times just before seizures, knowing I wasn't feeling well, and it's always in the 40-60 range. This time, after having eaten the rest of the papaya I was at 69. Even with the symptoms, I was surprised by the number. I guess I should take that stuff more seriously.

After eating that final half of papaya, I didn't have anything sweet in the house, that I could think of, until I remembered my mom's cherry bourbon jam. It was a miracle that I got that jar open. (I live with a man with the grip of a giant.) I spooned out a bite, then realizing that I was out of my seizure pills, I walked to the bedroom to lay down. Looking back I knew it was coming, ultimately, from the time of the second half of the papaya, but kept pushing to check my blood glucose and get that jam. I wanted ice water too, but knew I was about to hit the floor if I didn't just give up, and retreat to a safe place. It was so cold in there, probably low 50's (we don't have central heat), that I had to get back up and turn on the wall heat. As I laid back down, shivering, I kept thinking, "Breathe. You're fine. You can get through this. This is no different than normal, other than the lack of pills. It won't change anything. Deep breaths." And as the pins and needles in my hand grew stronger and creeped up my right arm, hot tears dripped down my cheeks and landed into the basins of my ears. I stared at the ceiling as things progressed, ever more painful as it reached my shoulder, then my face. When it hit the top of my skull I could have thrown up from the inner hammering, but I was too distracted. I realized in that moment, that there was nowhere else for the energy to go but back into my brain. For many, these seizures often progress into Grand Mal seizures, or turn into a series of episodes. I braced myself. Already it was the most aggressive seizure since my onset seizure back in 2011, a Grand Mal while driving. Usually the tingling stays around my hand and arm, but this one kept progressing until it had engulfed my entire right side. And it hurt, oh God did it hurt. In unchartered territory, I didn't know if I was headed into a more scary state, loss of consciousness, vomiting and choking to death, losing control of my bowels or bladder. I new I was helpless, so I kept taking long, slow breaths. 

As I braced, I twisted my neck to feel the cool pillow on my right side (that half of my body was on fire to the touch). In that moment, the coolness soothed my face and my mind and I had the sense that it was going to be okay. Under my breath, I began whispering over and over and over, "Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you."

As the seizure subsided, the pain continued to surge, but slowly lessened into a deep monotonous throb, both down my arm to my hand, and throughout my brain. Usually my seizures don't cause that kind of severe headache.

Not feeling well, still reeling, and aware of the seizure activity swirling in my body, I knew I needed more lorazepam, and I needed it soon. I called Emma into our bedroom (she's not normally allowed - she sheds too much) and asked her to come lay down on our bed to keep me calm. I've read that petting animals soothes the brain. I then called Dan and let him know the basics. He was headed home anyway, so that was handy. I then set down the phone to rest, just talking on the phone seemed to re-trigger the seizure energy in my brain. It was too hard to think, to talk. But I was scared, I knew I needed more pills, but Dan was driving, and I didn't want to bother him. I didn't want to put him in danger, knowing he was probably already speeding to get home, I wasn't about to add a phone call while driving to his tasks. I took several breaths and called my parents and gave the cliffsnotes of my dilemma. They asked for my doctor's name and quickly told me to hang up, that they would handle it. 

For the next 15-20 minutes I went in and out of various states of nausea, and tingling, and shivers, and hot flashes. I remember wondering if I should go find my empty lorazepam bottle and lick the old dust particles for some of the microscopic relief, but it seemed like too much energy to muster. The pain never went away, but did eventually subside. Danny was able to pick up the prescription, the one my parents were able to get renewed, I took a Lorazepam and everything eased up from there. The headache remained for the rest of the night, but I didn't have anymore seizures.

Needless to say, Friday was eventful, and perhaps a clear sign that I'm not meant to challenge my body with several day water-only fasts. Not as a person with stress and hypoglycemic induced seizures. You'd think I would have assumed it before engaging, but it never seems to get through my thick skull (not even through the surgery cracks) that I am not normal. I have special needs. I like to believe that I'm just like everyone else, but it isn't the case. One of these days, I have to accept it.