Unpredictability has become a predictable foe during my recovery. Recovery is not over just because my hair is growing back. "Recovery" is a process that I am still in. I am reminded of that fact every. single. day.
I look normal and act like everything's normal, but it is far from normal...unless you had a brain tumor and are having reoccuring episodes from the after-effects.
Medication seems to help during the day while I am working. But every evening, I crumble, despite a second dose. People (besides Tim) don't see that. So they like to think it's not happening. They can't handle hearing about it. So I suffer in silence. God forbid I make anyone uncomfortable.
This world of neurolgy and neuro-oncology and EEGs and MRIs has become a regular staple in my schedule.
Roswell Park is not just a place I sang in with a choir or that my students sent letters to (while thinking I did some good deed). It is a place I know well. There is a particular scent there: the stench of impending bad news.
Since my seizures are still not controlled by medication, I need to have another long-term EEG monitoring done. That means a week at the hospital with probes glued to my head. The next week I have off from work is in December. Merry Christmas. If that test shows epileptic spikes (which showed in my 30 minute EEG last month), I may have to have a second brain surgery.
I will have to relive this nightmare another time. Start over. "Recover" again. Have another scar from having my head sliced open. Have another artery cut. Have more cells removed from my brain-maybe the part where my memory is stored. Maybe the part where language is stored. It depends on where the seizure focus is. If the surgeon is off by a millimeter, I could become paralyzed.
Even if the test doesn't show constant epileptic spikes and the episodes are actually psychogenic, I will need to continue medication. Medication that currently makes me dizzy. Medication that makes my limbs heavy so that I fall off the couch, unable to move.
In addition, there is a 10% chance my tumor will grow back. "Oh, that's good!" they say. But that's 10% more than they will ever have to face. There is a 100% chance that I will be on medication for life. There is an equal probibility that I will live in fear all of my days.
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Cherisse, you don't know me and I don't know you. I only know Tim from Dunkirk Senior High Camp. But....if you need to talk, scream, vent, rage against God and fate and life etc, you would not make me uncomfortable, nor will I quote you platitudes and tell you how you should be handling your situation.If you say WTF and who is she to offer this and I never hear from you, so be it. You and Tim continue in my prayers and the prayers of my congregation. Debbie Baxter
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