Archive | June, 2012

I’m 1 in a Million

19 Jun

Literally. That’s the likelihood of getting Cushing’s Disease if you’re human. Although it is a rare disease of the endocrine system in humans, Cushing’s is somewhat common in dogs, affecting about 1/1000 of our furry friends a year. The clinical presentation is similar in both humans and our canine pals, and I guess I should throw it out there that it can also occur in horses and cats. Lucky me, right?!

Along the lines of my prognosis with Cushing’s Disease, I recently went for my first post-operative brain scan following my 3rd surgery pituitary surgery. Upon his initial reading, my neurosurgeon deemed the tumor gone, and that I’m pretty much out of his care. However, for the rest of my life, I’ll have to have bi-yearly MRIs, to check on any regrowth of the tumor (there’s a 10% chance of it happening). I’ll be 26 in a month, and I’ll consider it an early birthday present to myself that I don’t necessarily need a neurosurgeon in my life anymore!

I will go back to Shands (the hospital I go to for treatment) at the end of this week to meet with my endocrinologist, Dr. Quinn, Medicine Woman. She will most likely order a couple lab tests in the form of a 24-hour urine collection (who doesn’t love handling a gallon sized jug of their own urine!), and/or a Midnight Salivary Cortisol collection (these tests give accurate readings of cortisol in the body), to be performed the following week…so it will be a few more weeks before we’re certain if the Cushing’s is still present in my body. Once I am free of my my ‘roid intake and if in fact my cortisol is at a normal level, I will be free of Cushing’s and my life will hopefully return to what it once was. If my cortisol is still high, there may be a need for a 4th surgery, and this time it would be to remove my adrenal glands.

The adrenal glands sit on top of the kidneys, like little party hats, and these fun things are responsible for the production of cortisol (among other things). Having a bilateral adrenalectomy (both adrenal glands removed) is not something I want to have happen in my life, but there may not be another option. Time/lab tests will tell, and if that’s my latest punch, I’ll just have to roll with it. It’s already been a crazy year, and what’s one more surgery going to do to me?! I just hope daily and cross my fingers that this is the beginning of the end of Cushing’s Disease for me.

At times I feel like a 25 year-old trapped in a 75 year-old’s body, but here’s to hoping that this will all change within the coming months. Battling a crazy illness at such a young age hasn’t been the most fun, but it has been important to keep a positive attitude throughout. As I’ve learned the hard way, life really is too short to take things for granted. My life has been greatly impacted in many ways from the burden of disease, but I’m trying not to let it slow me down. I can just take things one day at a time, and you should too!

Thanks for all of your continued positive energy, love, support, and encouragement – it really does help get me through my days. Happy June/Summer – and don’t be surprised if your dog gets Cushing’s!

With love and a brain tumor no longer in tow (for real this time),