Friday, October 7, 2016

The Incredible Hulk Is Uninvited

I've been thinking about him with the frequency one might think about a new crush or infatuation, but not because he's handsome enough to have a starring role on Grey's Anatomy as another McDreamy...Steamy... whatever the catch phrasing is.

He's no actor. He's a real life neurosurgeon. (When I wrote that sentence, my mind jumped to this.)

So many questions come to mind: Does he have a family? Or, is his work pretty much his all consuming passion? Will he be a kind man, or maybe a brain obsessed version of House MD? Does he have a good sense of humor? Why did he pick this field? Does he believe in God? Does he drink coffee? Who is his favorite artist? What does he read in his leisure time? What are his annoying habits? What inspires him? Does he get enough sleep? What kind of music does he listen to?

  Paul Gardner, MD

It feels a little unsettling wanting to know all these personal things about him...this man who is still very much a stranger to me...but will, in a few weeks, be the man who either prolongs my life, or be the last face I see before my death. This man who went to work today on the other side of the country, and probably helped to save the life of someone else like me. This man who talked to my surgeon sister during a doc to doc referral and told her 'he thinks he can get it.'  This man whose confidence lends to the cautious optimism that there might be more time. Many factors are still up in the air, but this man, this surgeon who has operated on over 150 of these rare one in a million chordomas...'thinks he can get it.' Which leads me to my next mind jump, here.

The clinician side of me wants to connect with his humanity and his soul, and not relate to him solely from the perspective of his surgical skill set.  Although, his surgical gifts are amazing to think about really-he has one of the few sets of hands in the world that can masterfully perform this surgery. He helped to develop the surgical approach for this tumor resection. It appears he's even rarer than the uncommon tumors he fights.

I thought it would be awhile until I met him---originally, the plan was to head to Italy for a Thanksgiving vacation with my mother and sister, come back to Alaska, and then travel to Pittsburgh, Pennsylvania for surgery at UPMC Presbyterian in December. 

Unfortunately, frequent seizures have begun, and I've also mastered a fantastic impersonation of the fainting goats I so enjoy watching...whenever I try to bend down to touch my toes.  The most recent seizure I had happened in front of my three year old nephew Jacob last night.  

Jacob has been well trained by his Auntie to handle emergencies. I taught him how to call 911 when he was 2 1/2 and he has his address and parents names memorized to tell a call taker.  We also play a game called, "What would you do if...?" in which I give him various real world scenarios to consider. He has to think about them, and then we talk about how to respond to them...from moose, to falling through the ice, to seeing a wild dog on the road.  This kiddo, this little light of my life, is going to be Alaska ready.

So, during the building of a train station, where the inevitable showdown between Thomas the Train and Diesel 10 was about to take place, Jacob knew what to do when his Aunt started jerking about and not blinking...he went to get Grandpa because he knew it was an emergency.

It was a difficult decision to cancel our trip to Italy, as I'd already put it off for a long time. But...being realistic about the state of things my health takes precedence at this juncture. Besides, who wants to be with well read charming Gucci clad Italian men speaking in dulcet tones, drinking fine wine and swaying to music in charmingly lit piazzas anyway? (I write that glibly--- we all know I would have really been found sitting in the various Cathedrals praying all day). 

I emailed Dr. Gardner last night and he advised me to get in to see my neurologist and to move the surgery date up. Cordelia's eviction is now scheduled for November 4th, in Pittsburgh, Pennsylvania.  

This morning I was able to get in to see both the EEG technician and my neurologist. I have no doubt that it was a gift wrought by prayer of family and friends. My neurologist is a wonderful, witty brainiac with a heart of gold (as long as you aren't a moose or deer).  He told me the EEG was abnormal and we discussed various medications to help to stop the seizures and increase my blood pressure. He gave me a medication called Keppra.  There are three potential side effects that are worrisome- uncontrollable rage, suicidal thoughts, and (I kid you not) "stiff tongue".  An irate suicidal therapist who can't talk, who works with irate and suicidal clients?! I mean, come's a little bit of a funny scenario to imagine. I hope none of those side effects are my plight. The other comical side effect is "paleness." I'm *so* already winning at that one! ;-) On the off chance I do start dropping eff bombs or threatening people with karate chops...please tell me to call my doctor asap. 

Thank you so much for being with me on this journey---my next blog post is all about each of you!

Love, ~Anastasia


1 comment:

  1. I so love you are keeping your humor through this terrible experience. It's so crucial to remain "you". I can't imagine your level of sadness or grief that you must also be having. I can sort of relate. You inspire me to keep plugging along in this crazy life.