Monday, May 25, 2015

Tumor Troubles Part Two: School, Surgery, and the Road to Recovery- A Guest Post by Caroline Reinhart

So in my last post (which you can read here), I talked about the discovery of my tumor. Although that was tough, things were just getting started. School was in full swing, and so was my treatment. I had started a medication called bromocriptine (I am the only kid in America using it for my tumor right now. Others take cabergoline, but that's a long and more complicated story) to lower my prolactin levels and shrink the tumor. The goal was for this medicine to help eliminate the issues with my development and eyesight, and get the tumor small enough to no longer be an issue. Well, God had other plans.
After awhile, I noticed that my vision wasn't getting any better and neither were the side effects of my medication. During the beginning of the school year, I had several occasions where I missed the whole day or part of a day for doctor's appointments. Once or twice I had to stay several nights because of my cortisol  (stress hormone) levels, which I had none of for some odd reason. I also got tired quickly and many times went home early because I just couldn't make it through a whole day. I was tired of being confined to a bed and waiting for results. After much pleading on my mom and my part, we convinced the doctors that I needed a surgery.
As I've said before, some details get very hazy. It all went so fast and the medications that I take sometimes cause memory loss (Which is extremely aggravating for someone who can remember as far back as two years of age). But what I remember very well is the week of the surgery and my immediate recovery. So that's where I'll pick up...
The day of the surgery was October 3rd, so my mom, brother, and Mom's best friend (Who came all the way from Oklahoma to be with us) drove to Cleveland to spend the day, as I was having the surgery at Cleveland Clinic. They all wanted me to have a great night before I had my brain cut up (Exaggeration, of course. I gotta insert some humor where I can =D). We explored a nicer part of the city that had this awesome cupcake shop and some cool stores. It was late, so most places were closed, but we did get to go to the cupcake place, which was delicious. Later that night, my dad came and we ate at an Irish pub. It was an amazing night that was topped off with staying in a fancy hotel. I think that it really helped calm my nerves.
It was early in the morning, about 4:00, when we got up to leave for the hospital. I really just brushed my hair and threw on some random clothes to get going. Once we reached Cleveland Clinic, I noticed that a large part of my family was there. Two sets of my grandparents, great-grandpa, my sister and her boyfriend (Now fiance) , my paternal aunt and uncle, and my youth pastor. I couldn't feel more loved than in that moment when everybody was there. Just knowing that I had such a huge support system was phenomenal. Everybody had all of these presents for me, even my soon-to-be brother-in-law! But what I appreciated most was that they were there. Although the hospital staff probably didn't appreciate it. Especially with all the commotion that followed.
After signing in, we all got piled into a little room to help prep me for surgery. I got changed into a hospital gown in a separate bathroom. Once we were there, the doctors started going over the procedures with me and drawing arrows with Sharpies where I would need to be cut. This was to prevent any mistakes. Basically, they had to cut into one of my nostrils to reach into my head and debulk (Cut out) the tumor. Then, they had to do a tummy tuck and cut a piece of fat from my stomach to plug up the hole left in my nose. I was really excited about the tummy tuck, being a teenage girl and all, but I was pretty excited about everything else, too. I was finally getting the fast results that I wanted and I had all of the people I cared about to cheer me on. What more could I have asked for?
Anyway, after prep, the time came for me to have the surgery. My parents were also put into gowns so they could lead me to the operating room, but everyone else had to stay in the waiting room. My youth pastor prayed over us before our departure. It was the most spectacular thing seeing all these people coming together in a circle just to pray over me. Even some of the doctors and nurses joined in. After seeing such a thing, it was impossible to be scared. I knew that there were others outside of the room (Teachers, church members, classmates) who were doing the same thing throughout that day. If Satan was going to try and hurt me, he would have a lot of people giving him a hard time. At that moment, I was invincible.
After we left the prep room, the doctors went over everything again to be sure I understood. I gave one of them my phone so they could give me pictures of my tumor once it was out. I still have them, and I think I always will. To think that four centimeters of goo had such a massive impact on me is something that I will always ponder. The surgery was expected to take about six hours, but it only took four. Since I was knocked out for the whole thing, it felt even less than that. I woke up earlier than anyone thought I would, so my parents weren't there to greet me. I waited an hour after I woke before I asked the nurses to find them (It was lunch time, so I didn't want to ruin their meal). After a series of miscommunication, I finally just texted my family to let them know that surgery was over. The nurses were shocked because they had never seen anyone text so soon after a surgery (I don't see the big deal, but apparently everyone else does because they think I was crazy, too). Soon, the mob came in again, along with some new people, including my older brother who gave me a beautiful cross necklace and earrings. I sat there just talking and chatting with everyone and having a good time. Once again, I surprised everybody with my positive attitude and adjustment. I wasn't even on pain medication because I didn't feel anything. Eventually, everyone had to go and things slowed down. Mom and I posted on social media and called friends to let them know how good I was doing. THEN things got interesting...

I have one word of advice for anyone who has a surgery and comes out okay: DON'T TAKE THE MORPHINE!!!!! Kick, scream, do whatever possible to avoid it, but don't let them give it to you! It provides no relief for anyone involved. Around 8:00 at night, the nurses gave the medication to me. I said I didn't need it, but they insisted; it was protocol to make patients take it after a major surgery ( Another thing you should know: Medical professionals ALWAYS know best. At least, they think they do). Those same nurses paid the price when they had a high one on their hands. That calm, collected, texting teen turned into a crying, dehydrated, energetic toddler. All I wanted was hot water with lemon. Go figure that in all of the campus they couldn't find a single lemon! I didn't care, I was just thirsty, but apparently my comfort came second to my need to have lemons. It was two hours before I got anything to drink and even longer before I even had a sip because the water was scalding! I was crying mostly due to thirst. And whenever I finally fell asleep, somebody would come in to check on me. I was NOT a good patient that night. Which is why they switched me to oxycodone, but I was just better off without that, too. Kids: Hugs, not drugs.
The hospital visit dragged on for about a week before I finally went home. There were other misadventures, but they aren't as important. Let's just say I'm not happy when I'm high.

To continue, being home felt wonderful. It was nice to sleep in my own bed (Which is all I did for about three days). Several times, I had people visit me and lots of people sent cards, even a few of my classes from school. Once again, the support was overwhelming. After three weeks at home, I was all ready to go to school. But the administration insisted that I stay off for six weeks and didn't even give me my assignments. As much as they wanted me to continue my education, their priority was my health. They said that I couldn't do good in school if I was dead. The fact that they cared so much made me feel very valued. The love that I received is more than words can describe.
Eventually, I did go back to school, but in baby steps. I spent a few weeks going for half-days and worked my way up to full ones. My teachers and classmates were super welcoming. One even threw a party! And the makeup work load was considerably light, and I completed it all within a few months. My grades did drop, but no one made a fuss. In fact, they were proud of me for not failing at all. I did have to drop a class for a study hall, but even that teacher was super understanding. All in all, my immediate recovery was a major success.
As I look back on it all, I can't help but see God's hand in everything. I couldn't see it at the time, but now all I see is a series of miracles that never stopped flowing. Even now, by posting this, I'm in the midst of a miracle. Hannah did NOT have to let me do this. This is her blog, and she could've said "no". But God used her as a tool to help me inspire others and myself. I just wish that I saw all this before...
Check back next week for when Caroline talks about hitting rock-bottom and what's going on in her life now. Also don't forget to read Hannah Heath's other posts, including her "Life As a Lymie" page. See ya next week and don't forget to comment!

Related articles:
Looking at the World Through Lyme-Colored Glasses: Learning to Live With Chronic Pain


  1. Inspiring story :) So glad it all went well and that you recovered! Stay strong and healthy <3

    1. Thank you, but hold that comment for a second. This story isn't over yet... ;)


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