Post Lobotomy Update

Hi All!

Again I must apologize for being absent from the blogging world.  I have a pretty legit excuse which I am proud to throw around, getting me out of all sorts of trouble!  Well, since I last touched base I have had my brain tumor removed!! Hooray!! Technically the surgery is called "transsenoidal resection" - a fancy pants term for "getting a brain tumor sucked out through your nose".

I shall start from the beginning.  WARNING: This post contains fairly a descriptive account of surgery, post surgery and whatnot, I will *try* not to exaggerate but I live a life of hyperbole so I can't not be me.

So the last time I was on here I was wrapping up my first and last couple of weeks at work in Wemindji.  I had started my Resource Teacher position, finished some awesome training that I am very excited to put into use when I return to work, and was gearing up for another trip back home to Oakville to prepare for surgery which was taking place at St. Michael's Hospital in downtown Toronto. I arrived in Oakville the night before my pre-op appointment which ended up being extremely thorough and taking most of the day.  The next couple of weeks was spent going to various other appointments, getting pre-op scans, lots of bloodwork etc. etc. Then the big day finally arrived.  My mom and I drove into Toronto super early on the morning of Friday September 8th and I was quickly admitted into the neurosurgery ward and prepped for surgery! It all happened pretty fast and as soon as I was wheeled into the operating theatre, I was out like a light.  From 8:45 until well after 1pm I was under the knife and my entire tumor was successfully removed!! I woke up in a step-down-type of ICU for neurosurgery where they woke me every couple of hours to perform little neuro-tests to make sure I wasn't brain dead.  I was packed up FULL with gauze and such to keep my brains from falling out of my nose and it was not a pretty sight.  I had lots of blood and stuff stuck in my hair from the halo they had secured me into which was a little shocking.  I was violently ill for the next few days and was experiencing severe hormonal withdrawl symptoms.

"What happened once the tumor was removed?" you may ask.  Well, the tumor which was inconveniently located on my pituitary gland, was a 1.8cm little fella that had put the part of my brain that naturally produces cortisol to sleep.  The tumor was sending signals to my adrenal glands to produce WAY TOO MUCH cortisol thus making me very ill.  See side effects of high cortisol here: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/dxc-20197177 I was diagnosed with Cushing's Disease in February of 2017. When the tumor was removed, the source of the too-high cortisol production was eliminated, but the part that naturally made normal amounts of cortisol was still dormant, so I went from having a cortisol level of 799 pre-surgery, to a post surgery level of 76 (and now 39). A healthy woman has a level of cortisol of around 250. I am essentially going through hormone withdrawal and let me tell you, the effects are brutal.  I was warned many times by doctors and online research that I would feel worse before I began to feel better and they weren't lying.  I haven't felt this awful in a very long time.  It is like having the worst flu you can think of.  Every single muscle aches, my head is KILLING me, my nose and sinuses are in pain 100% of the time, I'm tired, nauseous, agitated, emotional, I have zero energy, I developed eczema and dandruff, my face swelled up, I have very little appetite and when I try to eat, I have no taste.  This won't last forever but for the next few months it'll be a hormonal rollercoaster while my cortisol levels are adjusted and my body kicks itself into gear. See the effects of low cortisol here: https://blog.udemy.com/low-cortisol/ and I have about 90% of the symptoms.

 So, that means that while I am producing little cortisol, I am on hydrocortisone therapy to that will slowly bring my cortisol levels up until my body can produce enough of its own. Then, I will be slowly weaned off the hydrocortisone until I am completely producing my own naturally!

Anyway, I left the hospital on Monday September 11th and went home to recover. I have plastic stents in my nostrils and sinuses holding open the space until swelling goes down.  I unfortunately also developed sinusitus post-surgery and found myself back in the ER this past Saturday with a wicked migraine and symptoms of a sinus infection. I of course assumed my brain was bleeding and luckily after a quick CT scan and bloodwork, that self-diagnosis was busted and luckily it was just a sinus infection.  Incredibly painful and debilitating given that I was already in a lot of pain and discomfort from a drill being bored into my skull, but at least I wasn't dying!

So, I have been laying low the last few days, having good days and bad days of sickness and recovery but getting in a lot of new baby Jack time (he was born Thursday September 7th!!!!!!!!!!!) and scouring Netflix for things I haven't watched yet.

Today I went back to St. Mike's for a quick checkup at the ENT doctor to evaluate my sinus infection and let me tell you I am going to need therapy for PTSD after that visit.  Since surgery I have been incredibly congested, my left side completely blocked since day 1 and the right side slowly but surely closing up.  Since I am restricted from blowing my nose, exerting any energy or straining AT ALL (aka don't even think about pushing out a fart), I could not clear my nose the conventional way.  Nor would I want to really, given that I am pretty sure if I sneeze too hard my brains will come shooting out of my nose but maybe I am just being overly safe??) So the doctor stuck a teensy looooong camera up my nose holes and low and behold there were my sinuses, very impacted and full of boogers.  One side, the left, he left to heal with antibiotics and a follow up next week, but the right side, ohhh the right side.  Well lets just say that usually I have a good poker face when it comes to medical procedures but I could not contain my overall disgust and shock at what this poor young resident pulled out of my nose.  With long tweezers and the handy camera, the doctor pulled not one, but TWO-THREE INCH LONG, 1 INCH WIDE BOOGERS FROM MY NASAL CAVITY.  I actually screamed.  Not in pain, but in utter shock. I apologized profusely to the doctor for having these ghastly things in my nose and for him having to remove them.  He calmly assured me it was all part of the job but I insisted it was a good thing he got paid for it at least because it was the most disgusting thing I had certainly ever seen.  Honestly, this experience was more traumatic than brain surgery.  He jokingly (I hope) asked me if I wanted to keep them before throwing them with a THUD in the garbage can.  I declined the offer.  Now though I can breathe out of one side of my nose LIKE BUTTER.  Smooooooth. I have a new lease on life! I was getting worried because breathing at night was becoming precarious and there were a few times I may have needed CPR if I had not woken myself up.

So that's really all that is new with me.  I am loving being able to spend some quality time with my new nephew, hating feeling so ill but glad that I am home and able to recover here with the company of family and friends and will have a busy few months coming up with lots of doctors appointments and tests to ensure I am on the road to recovery!! Ta ta!