Breakfast of Champions...

(Vitamin D, Prednisone, Oxycodone, Meloxicam & Lexapro... w/ the occasional Flexeril)

Tornado SHELLter

Ohhhh hey. A couple of things...

Since coming home from Boston we've had some major events:

1. We bought a house (photos to follow)
2. Oklahoma had its first tornadoes of the storm season
3. I finally made my chiropractor take x-rays cuz that back pain just wouldn't go away
4. Subsequent MRI confirmed six compression fractures
5. Enter stage right awesome back brace for four weeks (I'm now on day eleven)
6. I quit the job I've been working at since last June so I can hopefully heal properly and not have to get all cemented up
7. Yesterday I turned twenty-seven.

Commentary on recent events:

• There is nothing like a tornado watch to make you feel the true weight of a mortgage/home owner's insurance. 
• It's either a special kind of stupid or an amazing tolerance for pain and more likely a drug induced cocktail of both in which one unknowingly endures brain surgery with a broken back (This is where we now pause to stop and hate on Cushing's some extra-special more... my fall on the first trip to Boston in February was more than a fall because Cushing's can cause your bones to become brittle like that of an old Grandma's hip.)
• Back braces conjure up memories of watching Teenage Mutant Ninja Turtles and Star Wars storm troopers. Also, it may develop into a slight fear of falling and ending up on one's back, with arms/legs flailing in a futile attempt to roll over. 
• Healing is a 40+ hours/week, as in full-time, job... (without the paycheck) 
• Turtle Power was not what I thought twenty-seven was going to look like. 
• Perhaps when the next tornado siren sounds I'll just stop, drop, roll, and tuck in my arms and legs.:)
• Along with my medical alert bracelet I have a new accessory... a Nifty Nabber.  (Eric gave it to me for my birthday.) 

• Now all I need is one of these: 

Boston 2.0

(Hospital room view)


Today I get to be discharged. :)

Right now Eric is down in the cafeteria getting breakfast and I am sitting in my hospital bed getting really excited to begin this next chapter of Life. That chapter started this morning when one of my doctors said results of blood tests showed my cortisol levels were undetectable. This is awesome news for support of Thursday's surgery being a success. Further testing over the next few weeks will really nail things down, but this initial test was a big scary monster of expectation. ...And I passed.:) We have a lot to be grateful for. Mass General is a really good hospital. They have excellent staff, expertise, and facilities. We also have awesome friends and family who give us lots of loves and support. The hard part is over. To say we are anxious to go back to Oklahoma and watch my body morph back to its familiar shape/size and energy/strength/health would be a slight understatement. :) We know we are lucky. We enjoyed some of that luck on Saturday. Eric surprised me with a St. Patrick's Day cupcake. (Don't worry... he also downloaded music from Riverdance and fancied himself a little jig too.)

Five people and one guitar

Endoscopic Transphenoidal wiccah wha?

Oh hey,

One week from today. WhOOAaa!, Cushing's update comingatchya...

Monday: Fly to Boston
Tuesday: CT/Pre-Op Powwow/Anesthesiologist Huddle
Wednesday: Mental Preparedness Day
Thursday: Up the Nose with a Bitty Hose DAY!
Friday: Pain Killer Laced Dreamy Sleep Recovery Day
Saturday: St. Patrick's Day (in BOSTON)

We'll stick around Boston for about a week or so and then head home to Oklahoma where I'll get to have another week of putzin' around before going back to work. Two weeks post op I'll have some tests done to see if the surgery was successful and wahLAH!, road to recovery. I'm choosing to be optimistic. Lets.

Fancy a peaksy? (enter at your own risk!)

Endoscopic Endonasal Transphenoidal Macroadenoma Removal

G-rated:



Other rated (not for chilrins' eyes)



(If you ventured there, know that my tumor is not as big, bad and ugly as this one. Mine is a microadenoma which is smaller than a grain of rice. I chose this video because it's the one that best shows the entire surgical process. So there. )

Proposal

This. is. awwwwwesome...

Source: reddit.com via Josh on Pinterest

(Lindsay is in fact the girl in the front and she did say yes, I would know because I was holding up one of the signs! the guy right behind her is her fiance, Chris. I carried a backpack around all day with the signs folded up in the laptop sleeve along with snacks and jackets so she wouldnt suspect anything. The 5 of us behind her practiced holding the signs the day before so they wouldnt block each other from view.)

A good indicator...

I've wanted to post for a while but every time I started it wouldn't work. Mostly because I felt like I couldn't say,"I have a tumor that makes me sick" without being able to say where it was. Five months and lots of tests later, I have results and I'm in the mood for sharing.

The facts are:
-I was diagnosed with Cushing's syndrome in October
-At the recommendation of my endocrinologist in Oklahoma City I sought an out of state second opinion and differential diagnosis. Cushing's is caused by a misbehaving benign tumor that makes a hormonal ruckus. The trick is finding where it is located.
-The final test was conducted yesterday at Mass General here in Boston.
-My doctor called last evening with the results that weren't supposed to be in until Tuesday.
-"ACTH was high which is a good indicator we are looking at a pituitary tumor.
-Translation: my official diagnosis is ACTH-dependent Cushing's Disease
-(happy happy)

This is good news because had it gone the other way I would have had ACTH-independent ectopic Cushing's syndrome which meant going back to Oklahoma City, taking icky meds and having periodic scans for the next few years until something showed up. (Meh) Eric and I like the brain surgery option better, don't you? I meet with a pretty stellar neurosurgeon on Friday to discuss scheduling a time to poke up inside my nose. Boston is nice. :)

More to come!

Signs and Symptoms

Differential Diagnosis

Bilateral Inferior Sinus Sampling (02.17.12)