It feels like my surgery was a lifetime ago but it's really only been three months. Amazing how much can change in three short months. There is a lot I would like to forget about my surgery and the recovery, but I know that years down the road I will be glad I wrote about it. The day before the surgery I had lunch with both of the kids at school before saying bye to them and heading to Dallas with Bryson. I was worried how the kids would respond to me leaving but they both were so excited about going to recess that neither of them seemed upset or worried at all. I was so thankful for that. I, on the other hand, let the tears roll behind my sunglasses as I drove away from the school. We met up with my mom in Denton where we had dinner and then made it to our hotel around 7:00.
I tossed and turned all night long before my alarm went off at 4:30 a.m. The morning of the surgery we arrived at the hospital at 5:00 a.m. My stomach was in knots that morning...I was definitely feeling nervous. Time went by fast as they prepped me for surgery. I had an incredibly kind nurse who was very helpful and friendly. Bryson and mom got to sit with me for the majority of the time and Bryson kept the mood light with his many humorous remarks. There was a steady stream of doctors, nurses, and residents that came in and out of my room. After a while I started to feel a bit like a freak show at the State Fair. You could tell the residents were all giddy with excitement about getting to observe the removal of my tumor. I couldn't quit thinking about how all of these people were going to be seeing way more of me than I wanted them to! They asked me over and over to confirm what surgery I was having, what side the tumor was on and to list the potential complications to them. They wrote "yes" in black sharpie behind my right ear and "yes" on my left abdomen where they would be removing fat to do a fat graft in the location of the tumor. I met the anesthesiologist and loved him and he assured me they would do everything possible to help control my nausea. A wonderful chaplain came in and asked if he could pray with us which I greatly appreciated. Finally both Dr. Kutz and Dr. Mickey came in to make sure I didn't have any final questions and they assured Bryson and my mom they would keep them updated during the surgery. They had explained that the first hour would be spent getting me to sleep, the next hour is spent hooking monitors up to my facial nerves, then the next four hours are spent drilling through the bone to remove it, then about an hour to remove the tumor and an hour to sew everything back up. It made so much more sense to me why it was a nine hour surgery once they broke it down like that. Around 6:30 they asked mom and Bryson to leave. I had held it together all morning and at that moment I started getting really upset. All of the girl nurses and residents sat with me and reassured me that everything would be just fine.....they were all so extremely kind. I then asked for medicine to relax me and they immediately put it in my iv and that is the last thing I remember. I don't even remember them wheeling me into the operating room and I am grateful for that! According to Bryson and my mom the time they spent waiting while I was in surgery went by pretty quick. His sister and my dad both arrived later that morning and his friend Ted brought him lunch. They said a nurse and Dr. Kutz kept them updated on the progress and that Dr. Mickey had them come back in a room when it was finished. He told them the surgery had gone very well but that the tumor was much more aggressively wrapped around the balance nerve than he was expecting making it more difficult to remove.
The next thing I remember is waking up and hearing lots of hustle and bustle around me and wanting to open my eyes to see where I was and what was going on. I immediately said that I was going to throw up and that I needed a bucket. No one could find anything and everyone was in a panic trying to find something. Eventually they gave me a blue barf bag and I pretty much had one of those in my hand at all time for the 5 nights I was in the hospital and even a few days after I arrived back home. Bryson joked later that he thought it was going to be a permanent part of me. They then began to wheel me to ICU. I have no idea where ICU was compared to where the operating room was but it felt like it was a mile away. There were so many twists and turns and elevator rides. It was extremely unpleasant. I am not sure I can ever accurately describe the feeling of dizziness and nausea but it was like nothing I had ever experienced or could've imagined. Any movement felt like I was being tossed around in the ocean. I eventually got to ICU and immediately asked for an eye mask, which no one had. I was extremely drowsy but during wakeful moments I continually asked when my family would come see me. It felt like a long time before they got to come back. Now that the surgery is behind us I have asked Bryson and my mom more about the surgery and recovery from their perspective. I think it was really hard for them to see me right after surgery. They had my head extensively wrapped up in gauze, I was extremely sick, and the right side of my face wasn't moving like my left side. Everyone was so happy that I was ok but I think I looked worse than they were anticipating. I kept bugging them for an eye mask too and thankfully my sister-in-law found one in the gift shop and it eventually made its way to me. Any light in my eyes was very painful. The eye mask was another permanent fixture in the hospital and still is every night. Once in ICU they started neurological checks every 20 minutes. Asking me my name, where I was at, and what year it was. I pretty much slept the majority of the time I was in ICU but would wake up occasionally. We had said prior to the surgery that everyone would go back to the hotel to get a good nights sleep while I was in ICU but when it came down to it Bryson wouldn't leave. He slept in a chair until they came and got me at 2:00 a.m. for my follow-up CT Scan. That was another torturous ride down the elevators and through the halls of the hospital and back up to my room. Thankfully the CT scan showed that they had removed the entire tumor. When I got back to ICU Bryson headed back to the hotel.
I think I got moved to a regular room around mid-afternoon the next day. I was only supposed to stay there for three nights but ended up having to stay an extra night because I got so sick the day I was supposed to go home there was no way they could release me. Those four nights were a mix of ups and downs. Having moments of feeling pretty good and then having moments of feeling absolutely horrible. I also felt such a range of emotions. I was so grateful that the surgery had gone so well and that I was awake and aware of what was going on, but yet I felt so frustrated with how terrible I felt. Time went by so slow. Hours felt like days and a day felt like a week. I was thankful to have a number of sweet visitors (including my kiddos, my family, our preacher, church friends, Bryson's co-worker and Tailgating Sooner friends) but I felt so horrible that I was barely able to carry on conversations with them. I found out later that the kids said I looked scary when they saw me and Meg said I could be Frankenstein for Halloween. Bryson and my mom spent the majority of the time trying to force me to eat and drink something and begging me to let them open the blinds to let the sunshine in. And I spent the majority of the time sleeping and begging them to not crinkle any food wrappers or wad up any trash. For some reason for a while after the surgery sounds were elevated so much because of my right sided deafness. Those sounds were so painful! Thankfully that is much better now! They also spent a lot of time trying to convince me to go for walks in the hallway. Most of the time I told them no but I did manage to get up and walk with my walker a few times. Each time I would barely make it out of my door before I started crying. They had cut my balance nerve on my right side when they removed the tumor so my brain had to learn to compensate with just the balance nerve on the left side. It made standing up and walking really difficult. It was during those moments that it sunk in how hard this recovery was going to be. It was hard for me to come to terms with how I was able to run and jump and be so physically active just earlier that week and suddenly I could barely manage to get one foot in front of the other.
The Tuesday after my surgery I finally got released to go home. They had originally wanted me to stay in Dallas for a few nights after being released but at the last minute they agreed to let me go on home. Before the long drive home they gave me lots of nausea medicine and I slept most of the way home. Being home felt so great. Just getting to be around my kids was motivation to keep trying to recover! And they both were so incredibly sweet and helpful during the weeks that followed. They knew I needed time to rest and that I couldn't do the things they were used to me being able to do. My favorite moment post surgery was when I was walking in our neighborhood park with the kids and my mom. Meg was on her scooter zipping by but Brody insisted on staying right next to me. He held one hand while I had my other hand on the walker. He stayed with me the entire time as I walked at a turtle's pace and he would stop and sit with me along the way when I had to rest. Some kids from school were walking too and I was worried he would be embarrassed but he assured me that he wasn't. He never left my side!
The first two weeks of being home were probably the hardest. One day I would feel ok only to wake up the next day to feel horrible. I had moments were I honestly felt like it would never get better. Even though everyone reminded me that it had only been a week or two and that it would get better, it was just so much harder than I imagined it being. The steroids I was on caused me to have a lot of stomach problems and that with the dizziness and nausea were just a terrible combination. During this time I was so thankful for amazing friends who would text or call at just the right time to encourage me or I would get a card in the mail that would lift my spirits! I loved having friends stop by and bring lunch or dinner and getting to visit with them made me feel "normal" again. My mom was also an incredible help. She provided the perfect balance of letting me rest but then also telling me when I needed to get up and go walking or get out of the house for a little while. I started physical and speech therapy about 2 weeks post surgery and went for four weeks. The first couple of weeks of therapy were pure torture but I could see improvements and so I kept going and I am really glad I did!
I've had so many people ask recently how I am doing. At three months post-surgery I can honestly say that I am doing fantastic. For the most part I feel better now than I did before the surgery. A lot of people struggle with headaches after this surgery and I am so thankful that aside from a few headaches those first couple of weeks post surgery I haven't had any headaches. And I never even had to take pain pills after I left the hospital. I recently started running again and have been able to fully participate in workout classes again. During my initial physical therapy assessment I told the lady I was able to walk on my hands prior to my surgery and that I hoped one day I could do that again. On my last day of physical therapy she asked me to try it and we both were a bit shocked that I could do it! I went for my 3-month check up recently and Dr. Kutz was so happy with my progress. The only lingering issue is my right eye. It doesn't produce tears like it should and is extremely dry. I haven't been able to wear my contacts since my surgery and I have had two of my tear ducts plugged which has helped tremendously with the pain and blurriness. Dr. Kutz is still hopeful that this will return to normal and said that it can take up to 6 months. I know that if that is my only lasting side effect from this type of surgery I am very lucky! The only permanent side effect is that I am completely deaf on my right side. I knew going into the surgery that I would be so I was mentally prepared for. There was still an initial shock to what it was like to have single sided deafness. Thankfully after a week or two it felt pretty normal. It is difficult in a big group or when there is a lot of background noise and I am trying to have a one on one conversation with someone. It's also hard at a restaurant if someone is sitting directly to my right....I pretty much can't hear them at all. So I always make sure to put the kid I don't want to hear at the moment on that side ;). Thankfully Bryson, Brody, and Meg are so loud that I never have a problem hearing anything they say! I remember reading something that Mark Ruffalo said before my surgery regarding being deaf on one side (He had the same tumor removed a number of years ago). He said the best thing about it is sleeping on his good ear. I was anxious to see if it really was as great as he said it was and let me tell you it is! If I lay on my good ear I can't hear a certain someone snoring, the TV, the dog, or the children. It is absolute silence. Which means I can pretty much sleep anywhere anytime! It's the little things! When I saw Dr. Kutz in December we discussed different hearing aid options including an implant. I haven't decided if I am going to do anything or not just yet.
I really write all of this so I will always remember how far God brought me during this journey. From the first time I heard the words "brain tumor" until now. Through each decision that had to be made, he guided me. Even during the hard times I always felt His presence and His love. And when there was nothing else I could do but call out to Him....He was there. All of the glory belongs to Him! I will be forever grateful to so many who prayed for me during this time and who helped make this difficult time so much easier!
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