I don’t expect this to be a long post, or even entirely sensical (I’m just a week out of surgery, so be kind). My last post described my upcoming, essentially emergent surgery. So, so much has happened in almost 2 weeks from then.
After several days in the hospital, waiting to determine when the surgery would be scheduled, we finally came to the conclusion that it would all go down Friday, May 6th. As we suspected, the surgery would not be your “typical” brain surgery. This surgery would now involve the plastic surgery team cutting down my abdomen and taking a significant amount of skin to create a flap over the previous surgical areas, which were now destroyed by the radiation and infection. Although we hoped for a quicker surgery, realistically, it would be about 12-hours if all went well.
On the bright side of all of this, my neurosurgeon was confident that there would be absolutely no neurological side effects. He described this procedure as a “plumbing job”to get rid of the infection, to prepare the flap and connect it properly so that it functioned/survived as living skin. I don’t pretend to understand it all though…
Knowing my recovery time would be significant, me, my neurosurgery team, the plastic surgery team and the infectious disease team all agreed I could go home for just a night to relax and sleep in my own bed before an extended post-surgical stay. Little did we all know what a terrible idea that would be.
At home, I packed my bag for the hospital. I took a LONG shower knowing it would be quite a while before I had a decent one again. I did my best to straighten up the apartment into some kind of order. I went to bed scared, but I was handling it.
At some point in the middle of the night, I shot up from a dead sleep. My immediate thought, “I’m having a seizure.” I knew it right away. I could feel the strange, electrical sensations in my left leg, traveling up my side, into my left hand and then into my face. I was able to at least wake up my husband and direct him to give me my medication and call 911. Yet, he had never seen this happen. He was honestly in shock and wasn’t truly able to process all of this.
Then came the intense, uncontrollable shaking and twitching, the complete and utter loss of power over my own body. I heard my doctor’s voice telling me that despite it all, if a seizure ever came on, I’d have to do my best to stay calm. So, while I had no control whatsoever of my body, my mind was functional enough to keep telling myself to stay calm, conscious and continuously breathing. Unfortunately, I then lost all control to speak. I was snorting and drooling. I was convinced I was gone.
I frankly don’t remember it all settling down. However, when it did, I had absolutely no use of my left side. I was paralyzed. I kept trying to send signals to my foot and hand, “Move, just move”, but nothing…My left hand was basically clawed and I couldn’t straighten any of my fingers. My left side just felt dead. Hundreds of things flooded my head. Would I ever walk again? Would I have to spend weeks in a physical rehab center? What about my surgery? What if this happened during surgery?
By now, the police and EMTs were in the mess of my bedroom. I had regained the ability to speak and thankfully, the EMTs had good senses of humor. I began apologizing about the state of our apartment, while they laughed and told me, “You ain’t seen nothing.” They helped keep my calm, although my husband was still an absolute mess.
At some point, I started to regain movement and sensation in my left side. So, now it was time to once again trek to the hospital I had only left hours ago. All I kept thinking was that I should’ve never gone home. I shouldn’t have been so selfish to have pushed to leave. Here I was, beating myself up after a major, possibly life-altering seizure.
Now, I was being wheeled back into the UCC. God knows what other catastrophe awaited. As if it wasn’t enough that I was scheduled for major, complex, emergent brain/plastic surgery in just hours…now I had to face this seizure too.
I guess things can always be worse.