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.

Itchy, Scratchy, AAACHOOO!!!

I’ve decided that having seizures is stupid. I didn’t sign up for it and I’d like to return that part of the Brain Cancer Special.  Wait…No…I’d actually just like a full refund. I’d like to return the whole package, please.

I had my vaccine shots yesterday (or we hope they are, anyway) and met with my Neuro-oncologist. He’s got a resident in rotation who is VERY thorough, sharing a lot of great information. We end up having longer visits, but we leave feeling like we’ve learned something.

What we learned yesterday:

1. What I experienced last week was Status Epilepticus. The scary reality is that IT may kill me before the brain cancer does. I know that sounds morbid, but it’s true. I now have emergency medicine and everyone in the house, friends, neighbors will be taught what to do if I have a seizure.

2. My Expressive Aphasia is likely a focal seizure rather than an aura. I’d suspected that may be the case, but the doctors agree. Since it seems to happen first, I find that every once in a while I’ll talk to myself out loud, just to make sure I can.

3. I likely had seizures because I’d been so anxious about the MRI and had been sleeping poorly. It’s doubtful that the 1/4 of a pickle martini I drank triggered them. I’m now back on an 8 week MRI cycle to reduce the anxiety.

4. There MAY be a correlation between migraine and seizure – but it’s very debatable, kind of like the chicken and the egg.

It’s taking longer than I’d expected to recover from this event. It may be adjusting to the new medication doses just as much as the seizures themselves. My energy level is low and I’m a little slower mentally – no quick retorts from me this week. Just getting my head around this new development is a little overwhelming and I may start wearing a helmet in addition to carrying Ativan in my pocket 24/7.

In other news: My vaccine shot site is itchy – enough to wake me up. The dog is still itchy – enough to wake me up. And I feel like I’m fighting a fall cold – but I may just be run down and recovering. Tea with lemon, honey, and cinnamon tasted delicious last night and I feel a little better this morning, so hopefully I’ll bounce back at any moment.

My mom is here helping out and I can’t express how much we appreciate her. When she leaves, we’ll be getting around on bikes – so I’m shopping for saddle bags.