Childhood Anxiety

My son’s reading light has developed a ‘twitch’. It behaves like a strobe light when you first turn it on. Eventually, after some effort, it behaves like a reading light should. While in strobe light mode, I cover it up with my hand – sensitivity to the flickering on my part. Last night, he asked me to not cover it up because he liked it when it flickered (this is the kid who wanted to put the Instant Party Machine on his Christmas list when we got yet another catalog in the mail.) I explained that the light hurt my eyes when it flickered and I wouldn’t remove my hand. He asked why so I explained that for some people, that strobe light activity is hard on their brains and can sometimes trigger a seizure and I wasn’t taking any chances. Keep in mind, my kids have seen 2 of my seizures and have to walk home from school because of them. After we finished our book and were snuggling before he fell asleep, he asked if he was going to have a seizure. I explained that he wouldn’t likely have seizures in his lifetime. I went into a little more detail about why I do and what we’re doing to avoid another. He was confused why I had a seizure BEFORE I had brain surgery – but finally understood after I explained a little more detail. He had an ‘OH, now I understand’ moment and went to sleep peacefully.

As an aside – my desire to put the 7 person tricycle from that same catalog on MY Christmas list was nixed. I thought this was unfair and tried to make the argument that surely we could find 7 people to ride it with us. No luck. Clearly it was a matter of where to store it rather than the $20,000 price tag.

Back to the anxiety… This morning, I woke up and had no voice (thank you lingering cold.) I woke my children up with whispers. My daughter was unfazed. My son, remembering the expressive aphasia preceding the grand mal phase of my seizures, was not quite as unfazed.  He asked if I was ok at least 4 times. I explained in a whisper that I was fine and had just lost my voice, but it would likely come back later in the day. Unconvinced, he kept a close eye on me while we went through our morning routine. Once he saw that the routine hadn’t changed and I still had enough awareness of the time – 5 minutes to get glasses and shoes on, so move it! – he finally relaxed.

While most of the time, our kids handle the new me and all that comes with it calmly and bravely, every once in a while the anxiety comes through. It’s a reminder to us that we need to check in from time to time and remind them that all is ok and they can always ask questions if they’re worried about something…anything. I don’t think this is necessarily unique to our family, so remember to tell your children you love them and look for the signs that maybe, just maybe they need to talk about their worries.

Pity Party With More Drugs!

I’ve got some old drugs and now I’ve got some new drugs.

I’ve got brain cancer and now I’ve got potentially life threatening epilepsy. But as my epileptologist says, maybe it will go away in a few years. He’s an expert and has lots of experience (hence, ‘expert’) with these things, so I’ve no reason to doubt his prophecy. I’m willing to wait it out to see if he’s right.

As an extra buffer to stave off another status epilepticus episode, I’m now stepping into another anti-seizure medicine in addition to the maximum dosage of Keppra. I also have Ativan within reach at all times. Oh, and because he’s worried about the unborn child I’m NEVER going to create or have, he’s put me on Folic Acid…just in case – in spite of my assurances that it’s NEVER going to happen.

This new development in my neurological story has been a bit of a shock to the system. Not only do I have a high grade, aggressive tumor potentially lurking in the folds of my grey matter, but now I’ve got an escalation of my seizure status to ‘potentially life threatening.’ Oddly enough, I feel more infirmed now than I did when I was going through chemo and radiation. I mean, physically I feel better, but psychologically I feel more infirmed. I’ve got two neurological conditions that could kill me within a heartbeat. The number of drugs I take now, WITHOUT chemo, is daunting. I’m counting pills and making tick marks on a chart just to keep track of what I’ve taken.

Don’t get me wrong, if it keeps me alive, I’ll do it. But I’ve always been a bit of a hippy when it comes to putting toxins into my system. I’d LOVE to find an alternative, but I know I may not have the time to test out any alternatives. Having said that, has anyone tried neuro-acupuncture?

I’m slowly coming out of my pity party, so don’t fret. In spite of my lingering fear and adjusting to the new developments in my brain, it was a good day. I’ll be strong, courageous, and optimistic tomorrow. Tomorrow will be another good day.