The Nemec Family: 2017

This was an interesting year for me. For a girl who is so healthy, I spent a lot of time getting poked and prodded! About two years ago, I started to feel some strange itching and tingling on my left arm. It was accompanied by some other unusual symptoms, like fatigue and muscle pain and weakness, that I just chalked up to getting older or doing too much. I let it go for about a year, and then decided to ask Dr. Zutshi about it. He had me go in for an MRI just to rule out the possibility of MS. I had my first MRI in November of 2017. The cervical MRI didn't show anything, so they moved up and did a brain MRI. The good news was that there was no sign of MS, but they did happen to find a mass on my pituitary gland, which is located on the brain stem. Although it's a little scary to hear "mass" and "brain" in the same sentence (also interchanged with adenoma, microadenoma, and my favorite, tumor), Dr. Zutshi wasn't worried. These types of tumors are almost always benign, and most of the time, don't have to be removed. He had me go in for a vision test to make sure the mass wasn't impeding on my optic nerve (passed with flying colors, although the tumor was touching the nerve), and also my first set of lab work. When the labs came back, my ACTH and cortisol levels showed out-of-range, and everything else was normal. This wasn't necessarily alarming, as cortisol levels are highly sensitive, and can depend on a LOT of factors. So between December and May, more labs were drawn and tests were performed to verify that my levels were continuously high. After a visit and more lab work by a local endocrinologist, it was determined that I likely had Cushing's Disease, and would probably have to have the mass removed. I was referred to Dr. Siviero Agazzi, a top neurosurgeon specializing in my type of pituitary gland disorder. I had a few appointments with Dr. Agazzi and his staff, and endocrinologist, Dr. Candelario, and several more labs and tests. On Halloween of 2017, it was determined that I did in fact have Cushing's Disease (although I must have been told 100 times that "I didn't look like the typical Cushing's patient...Google it. You'll know what they mean. I was just lucky enough that they caught the mass before I started showing symptoms). Surgery was scheduled for Tuesday, November 28th. It was to be transphenoidal, meaning a head and neck surgeon, Dr. Parasher, would be starting the procedure by going through my nose. Once the brain was accessed, Dr. Agazzi and Dr. Reintjes would perform the excision of the mass, then Dr. Parasher would finish up. At that point, I wasn't nervous. I was really tired of labs and testing, and was quite ready to have a decision and move on! On Monday, November 27th, we picked the kids up at school, brought them to grandma and grandpa's and headed up to Tampa, where the surgery would be performed at Tampa General the next morning. We had a beer at Coppertail Brewery (just one!), dinner at American Social (somehow I did have an appetite), met up with my parents and stayed the night at the Marriott Waterside (and somehow I slept! Oh yeah, Xanax.). I woke up at 5am, with a little more anxiety, and headed to TGH. Checking in was a speedy process, and by 6:45, I was in a lilac paper hospital gown with an attached heater (see inflatable-like photo below). Lots of nurses came in, lots of doctors came in, and then the nurse anesthetist (my favorite healthcare provider of the day), finally came to visit. I said goodbye to Nick, Mom and Dad, told mom to stop crying, and was wheeled down to the OR. After observing what seemed like around four million spectators, and pointing out that the room looked a lot like "Close Encounters of the Third Kind," I was out. I woke up after a four-hour procedure, to a recovery room that featured a fish ceiling tile. But not just ANY fish. Dory. Three Dories. And 47 other fish. I know because I was in there for 6 hours (I think I slept for most of them), and counted it repeatedly. Finally around dinner time, I was off to my living quarters for the next two days: the NSICU, where every hour you are awoken to be checked, poked, stuck, drawn, measured, whatever....nonetheless, the staff was amazing. Every single person. They did everything they could to make sure you were always happy and comfortable, and I was. Although the first night I had a pretty severe nosebleed that lasted around an hour, I got to see Nick, mom, dad, Tara and Carrie, watched "Rudolph," played a round of Jeopardy with a neurosurgeon on call (I kicked his ass), and slept a little. The next day, I felt great. Nick had stayed at the Westin with the boys the night before, and because they weren't allowed in the ICU, grandma and Mimi took them to the aquarium and shopping. Nick hung out with me for the day. That night, Paula, Scott and Andie came to visit, and I had an MRI to make sure all of the tumor was removed (it looked good!). The next morning, I had a final set of labs taken, and then got to go home that afternoon! I slept most of the ride home, and was thrilled to finally take a shower. I was greeted by Abby, Jackie, and Sarah, who gave me a life-sized (like human-size, not actual sloth size) sloth to keep me company!

I'm now three weeks and one day out from surgery. For the most part, recovery has been good. A week after surgery, I had another pretty severe nosebleed that lasted around two hours. That gave me a decent scare, but the neurosurgeon on call (who happened to be my victim in 'Jeopardy' game-play), said it was likely blood clotting that came loose. I was good for another week, and had successful follow-up appointments at the endo, neuro, and ENT (where he did his best to suction my brain out through my nose using a fancy Shop-Van). Shortly after, I developed a headache that turned into a severe headache accompanied by vomiting, shaking, and chills. After hallucinating and seeing my bathroom filled with red mylar balloons (I thought someone was having a party!), Nick brought me to the ER. Upon running some labs, it was determined that my body was going through withdrawal. I had been overproducing cortisol for so long, and now my body wasn't producing any naturally. The replacement dose that I had been taking was ultimately too low. It was adjusted, and about 24 hours later, I was feeling much better. That was five days ago, and I am feeling great. I am on a new maintenance dose that I will stay on until my body starts producing the hormone again on it's own (it could take months, years, or never). I go back to the ENT for more vacuuming on January 3rd, to the neuro again on January 5, and the endo sometime mid-January. I will also have another MRI in late February, once the swelling and fluid have dissipated. But for now, everything is looking good! In six days, I can bend over, drink out of a straw, and blow my nose (high-five!), and begin doing light cardio. In three months, I can dance again.

SOOOOOOOOOO.....there was a lot here. But after two years, this is where the story ends :)

TGH all lit up :)

Monday night, before surgery

Going home!

I don't know how this happened, but 2017-2018 has brought me a kindergartner and a third grader! Brixon is in Mrs. Defond's class, and his favorite subject is science. Hudson is with Mrs. Ferretti, and he loves music! The first quarter saw Brixon on the honor roll, and Hudson as October Leader of the Month! They both enjoy school, and have made lots of friends (old and new!). Brixon's closest friends are Tyler, Davin, Luca, Sammi Jo, Izzy, Jackson and Ryland. Hudson also likes to hang out with the big kids, as well as Ella, Marcy, Haley, Alexandria, Chase, and of course, Juju and Taylor down the street. They are smart, and challenge me every day, but watching them grow and learn is worth the anxiety!!