OK, I’ll start!

The week before last, I finished off a round of chemo (#4 out of 6 monthly cycles), and began having some complications shortly thereafter.  Specifically, I was driving to work one day, and begun having petite mal seizure – feelings, which hasn’t happened since my surgery last August.  Five minutes at work only made things worse and, by the time I was able to get into the doctor later that morning, I was having full-on petite-mal seizures and kinda freaking out in general.  Wednesday, 3:00 pm.

Later in the week, my symptoms escalated to where I was developing some swelling on the side of my forehead (outside the skull, so not a reoccurrence, but still weird).  Long story slightly shorter, several doctor visits with several doctors (wedged between various vacations), an increase of the slight swelling into a big golf ball sticking out of my head, and quite a few tests resulting in quite a few needle marks, revealed me to have developed a pseudomeningocele (which is basically a blown gasket along the incision).  The doctor’s advice?  “Go talk to your neurosurgeon.”  Tuesday, 5:30 pm. 

Got it.  So, the next day (my first day back at work in five school days), I place a call to my neurosurgeon (an extremely busy doctor at UW, who can only be reached via his extremely busy nurse).  Maybe three hours into my day, I begun feeling pretty strong pre-seizure symptoms again, had a friend drive me home, and within 5 min. was having full-out convulsive seizures (which won me an ambulence ride to the ER).  The doctor there faxed my records down to UW, and said, “Go home and wait for a phone call back.”  The following Wednesday, 1:00 pm

Wednesday, 2:00 pm, I hear from UW that they received my records; a later review of the message revealed them saying they got part of my records,  requested the rest, and would get back to me (remember that part).  Thursday passes, with mild pre-seizure symptoms and increased swelling (woke up to my eye being sealed up…lovely), and no contact from nobody, despite numerous attempts by numerous folks.   By Friday, my sights were pointed towards the local neurosurgery office I’d initially consulted with in July 08, hoping to cut UW out of the picture; despite some wonderful assistance from office & nursing staff, all they could tell me was, “This needs to be handled by the doctor that did the surgery.”  Who, by the way, was continuing to dodge many messages from many persons advocating for me in that and other offices.  The following Friday, 11:00 am.

As the day wore on, I watched my chances of receiving treatment before the weekend slip away.  My primary doctor’s nurse was now on the case (after also dodging my calls), working the phones on my behalf.  Finally, I receive a call from the elusive UW doctor’s nurse, informing me that THEY HAD NEVER RECEIVED THE RECORDS THEY HAD REQUESTED ON WEDNESDAY!  And were just NOW getting back to me to let me know!  The following Friday, 4:30 pm (just minutes before any reasonable medical office would be closing).

*Just to make it worse, my primary doctor’s nurse later called me to inform me that, in fact, UW HAD received the appropriate records, and just didn’t realize that they were in electronic format. 

Now, I sit here, packing a giant golf-ball-sized collection of cerebrospinal fluid on my forehead, afraid to move across the room for fear of more seizures, and hoping/praying that Monday will bring with it clear, decisive answers, and subsequent treatment.  Saturday, 7:00 pm, and counting…

A few follow-up thoughts to this lovely tale…

– To conclude my angry venting, this is what’s wrong with American medicine today: too many people, all afraid to do anything for fear of being sued, not willing to make a simple decision which would actually provide appropriate care for someone with a clear medical need.  So, who’s at fault here?  Take your pick, but I’m gonna keep being polite to the dedicated, hard-working medical support folks who I believe are trying their hardest to negotiate a pretty screwed-up system.  Let’s blame politicians,  lawyers, and insurance execs; everyone hates them already…

– As happened before, I’m blown away at how quickly people come out of the woodwork when someone they know needs quick prayer & support.  As I’ve stated before, I don’t fully understand the Christian concept of prayer, but I can’t argue with the results when people do it.  Keep ’em coming!  And I’ll keep you posted as anything develops…

– This has been another one of those “not as bad as it could have been” scenarios, where I look back and thank God for steering me away from the worst.  I travelled over the weekend, and had some leadership roles with a group of students I work with, yet my symptoms didn’t escalate during this time.  I’ve been driving a ton lately, but never experienced seizures during these times (I don’t need to tell you how bad that could have been).  And, when I began feeling seizure symptoms at work (a middle school), I could always get myself away from students before anything too frightening went down.  You’ve just gotta keep finding things you’re thankful for…