Fragility:
fra·gil·i·ty
/frəˈjilədē/

the quality of being delicate or vulnerable.
“a film about the fragility of relationships.

If being delicate or easily broken is a prerequisite for fragility, then fragility is not the word I was looking for to describe how I’ve been feeling lately.

I knew that recovering from cancer was going to have its challenges, but what I wasn’t prepared for was the deep sense of loss I’d feel over the thought challenges I’d face.  By thought challenges, I mean my inability to multitask, focus intently on something, and not lose track when interrupted unexpectedly.  Prior to my surgery and radiation, I was blessed with laser-sharp focus, and the ability to do mental gymnastics at will.  It was nothing for me to have multiple things going on in my mind at one time, and I rarely forgot anything.  I actually prided myself on being able to stay focused on so many things for so long.

Ahhhhhhh, Proverbs 16:18,
“Pride goes before destruction, a haughty spirit before a Fall”.  Nothing like a good ol’ bible verse to bring it all home. 

Ironically, the above verse was one that my grandma shared with me in a letter along with a few others that she considered to be her favorites.   I wonder if when she shared it, she knew I’d someday need it.  Regardless, I find myself working through the hardest part of recovery;  Acceptance of what has been lost.

In the past 6 months, I’ve had two episodes of what has been called “breakthrough seizures”.  They consist of extremely mild episodes of left-side, hand, and arm tingling, numbness, and immobility.  The first time this happened, I thought I was having a stroke, so naturally, I googled stroke symptoms and put myself through the stroke protocol testing.  I made sure to tell the paramedics that when they arrived via ambulance to take me to the Froedtert ER.  It was at that time I learned that what I was experiencing was a seizure.  Nothing close to a grand Mal (tonic-clonic) like I had when I was first diagnosed with brain cancer, but a seizure nevertheless.  Prior to being discharged I was given an extra dose of Keppra and was told that should this happen again, I could wait for 20 minutes to see if the symptoms resolved on their own but would need to tell my oncologist.  I was advised that this is not an uncommon occurrence.  Once you’ve had your brain operated on, and radiated (even when it’s targeted radiation), damage is done.  There is only so much your brain can manage at one time, so for people like me, if I’m physically ill with any sort of cold or virus, or if I’m exceptionally stressed, my brain checks out.  It’s no longer able to handle too many things at once.

I experienced a second breakthrough seizure a couple of weeks ago and it was after that, that my oncologist suggested we switch to a different medication.  Besides that, she could see that I was – once again – struggling to accept my circumstances and the idea that this was going to be a lifetime issue.  She told me, that Keppra can have negative effects on mood.  I’m already on Lexapro and a mild dose of Adderall and I’ve made it clear I don’t want to increase the dose of those meds.  The only other option was to get rid of the Keppra.  The problem with the med switching is that the new medication I’m taking has to be given and regularly increased over the course of 8 weeks. You work your way up to the correct dose while continuing the Keppra, and once my labs show that I’m at a therapeutic dose of the new medication, I can discontinue my Keppra.

To prove my point about my thinking struggles, I’ve literally lost my train of thought and the point I was trying to make while typing up that last paragraph! It’s somewhat funny when I stop to think about it, but not so funny when it’s happening on a day-to-day basis, all day long.

I’ve had multiple people my age tell me that they too experience this lack of ability to multitask and notice they’re becoming more forgetful and lack the focus they had in their youth.  I mean, there are actually memes about old people needing to turn down the radio in the car so they can “see”.  That’s me.

My cousin Peter, who has admitted to Attention Deficit issues since he was a little boy, teases me about this and says “Now you know how I feel!” And while I do now appreciate how much this sucks, It didn’t stop me from blurting out before thinking, “But you don’t know how it feels to be higher functioning! You’ve been like this your entire life!”

Pete, who’s never one to let go of an opportunity to mock me, jumped on that immediately….

” YOU don’t know what it’s like to be higher functioning?”.

We just roared over this!!  Again, Pride before the fall.

All of this is to say, that I find myself really struggling to adjust to this new normal.  I’ve been told, I could continue to improve, but at the same time, the radiation I received could continue to cause increased damage down the road.  No one knows for certain.  Surprisingly, this doesn’t scare or depress me.  I’m upset about where I am today which is definitely not where I was 2 years ago.  Writing about it though, does make me think that it may be best to just appreciate where I am TODAY because I DON’T know where I’ll be in 2 years.  My reality is that I could be worse in 2 years, OR, I may be even better.  But all I have is today and so I ask myself; What do I know to be true?  I’m alive, I have my family, I’m still able to type and reason through my feelings and thoughts, and while I may not be what I was 2 years ago, in some ways I’m better.  I’m more sympathetic to those who’ve struggled with focus their entire lives, and those who have far worse cognitive issues; those with dementia or any other neurocognitive disease.

I guess I’m not so fragile after all.