April 8th was a day to celebrate Cushing’s awareness, a disease/condition/syndrome so aptly named after the man who “discovered” it, Dr. Harvey Cushing. I toasted him around 1pm on that day, with a refreshing glass of cherry lime sangria at a lovely place in DC, while there on vacation. I should have done something to promote Cushing’s awareness on that day, but in my mind, better late than never. Also, I feel as if I need closure to my situation, and the end is finally in sight.
Before my trip to DC, I met with a new endocrinologist at the Cleveland Clinic in Weston, FL, and it was determined that I would need to have my adrenal glands removed (shocking information, I know!). The majority of the doctor’s time is spent at the Cleveland Clinic in Ohio, where they have something like 26 endocrinologist and 6 endocrine surgeons, so he recommended me to their top surgeon way up there. I was originally scheduled for surgery on April 22nd, but that date got changed to May 6th, which is less than a week away at this point!
After meeting the new doctor, I of course had to do lab work for him, in the form of a 24-hour urine collection, dexamethasone suppression test, and a few random blood draws – which always makes for an enjoyable couple of days. They do know me by name at the lab where I have my work done, but I don’t know if that’s necessarily a good thing.
And then, I agreed to participate in a 6 week saliva study for the Cleveland Clinic in diagnosing people with Cyclical Cushing’s, as they think that’s what I’ve been blessed with. So every day for 6 weeks, I had to collect my saliva 2x/day, by placing a small cotton-ish log roll (it kind of looked like a small tampon, but without the string) under my tongue for 5 minutes at designated times. My cortisol was being tested, and saliva is a very accurate measure for said hormone to be tested. I was unable to drink alcohol, coffee, or juice 4 hours before the collection time, with no food or drink an hour before, then I had to rinse my mouth out with water 10 minutes before the collection. I then had to freeze the samples, and send them off to Cleveland in 1 week batches. I bet you’re jealous after reading about that, as it was really fun. But it will hopefully benefit others down the road, somehow, somewhere…
So now I’m in the preparation/anxiety stage of my upcoming surgery. For starters, I’ve never been to Cleveland, but I’m excited to visit a new place. It’s still a bit cool up there temperature wise, so I’ll have to forego my sundresses and sandals for sweaters and boots. Or pajamas, slippers (or those socks with the grippy things on the soles) and hospital gowns, as I doubt I’ll be outside seeing the sites all that much. On the other hand, I don’t know that I feel all that prepared for surgery, but I do have 7 pre-op appointments next Monday, the day before my surgery. That will be the first time I meet the surgeon and his team, as well as the last day that I drink a margarita and eat a lot of queso while having adrenal glands, as it will be Cinco de Mayo! Hospital stays aren’t the greatest, but I feel like an old pro at this point! This is what I looked like following my 2nd brain surgery in December 2011 – my, how far I’ve come!
It’s hard to believe that it’s been so long since I’ve been battling this horrid disease that is Cushing’s, but I feel hopeful about this next/last step in the treatment process. I will in turn be adrenal insufficient for the rest of my life, but it’s a manageable condition, and I’ll apparently learn all about it when my endo comes to see me in the hospital the day after my surgery. I will have to take a few medications daily in order to stay alive, and wear a medical alert bracelet or other piece of jewelry, in case I’m ever in an accident or pass out on the street and need to be revived or treated. The swanky bracelet is a precursor to the sweet ratatattoo I’m going to get – inside wrist, haven’t yet determined which arm.
I have much more to write, but don’t want to have an overly long blog post – so hang tight and I’ll post more about the Gland Finale before my surgery!