The last three weeks have been fairly interesting to say the least. I finished my all my treatment at the beginning of April, and afterwards I was circling back with surgeons I talked to to see what my options were. One of them was still open to doing a “smaller scale” surgery to really just help with opening my mouth. At this point I could only open my mouth maybe two millimeters. In May, I had decided to move forward with doing this surgery, and it was set for June 15th. Up until the few days before surgery, I had kept pretty busy so I wasn’t too encompassed by the thought of surgery. As it got closer, my anxiety was through the roof almost every night. Then the morning finally came.
I had to report at 5:45AM. My husband took me and stayed with me until they took me back to begin. At this point, to say I was scared was an understatement. I was about to undergo major surgery with several unknowns like the status of everything in my mouth and jaw til they open it all up. The plan was for some mandible reconstruction and to use a free flap from some part of my body. Where on my body was dependent on what they saw inside and what they needed to restore that area. It could have been from my fibula or shoulder blade areas to name a couple.
According to my husband, when they called, it had been about 9.5 hours later. Pretty long surgery if you ask me haha. When I had woken up, my husband was in my room. I freaked the f- out when I had learned that it was the complete next day, like I had been asleep for longer than 24 hours. I was honestly tripping on that for a little bit haha. Last thing I remember was when they were starting my tracheostomy. I was numbed in the area, but had to be awake for it. It was needed for intubation to make sure I could securely breathe throughout the procedure and afterwards, like if there was swelling.
Let me lay out what was actually done to me and some of the complications they encountered. They basically cut open half of my face, took out some of the ‘dead’ tumor, released my tightened facial/masticator muscles, ‘rebuilt’ the area with a free flap from my left forearm along with a plate and some screws, removed some teeth, and used skin from my thigh to cover up where they took and used the meat from my forearm. The biggest reason I has such extreme trismus (inability to open my mouth) was due to radiation. It basically made the muscles in my face/jaw so tight, I couldn’t open my mouth. Radiation is also who to thank for losing six teeth in this surgery process. I had fairly severe osteoradionecrosis (bone death) in my jaw. This was the most concerning complication. The teeth they removed were free floating, meaning the bone around them had been dying, and they either were already falling out or were on the verge of it. The osteoradionecrosis in my jaw is basically the biggest complication they encountered. I was told that up until about my right incisors, all the teeth I have left on my left of them are loose. They could ‘fall’ out whenever. Also, my whole jaw may completely die in time. So more than likely full jaw reconstruction in the future. yaaaaaay. Radiation: the gift that keeps on giving.
I was in the hospital for six full days. I was in the ICU for four of those days. It was pretty intense. The scariest part was the tracheostomy. Scary enough for me that I legitimately questioned if the whole procedure was worth it. It was terrifying in the beginning. I felt like I couldn’t really breathe, but yet I could. There was a humidifier on it when I was just breathing through the hole, and it felt like I was drowning at times. Then it was hard not to freak out and panic because that would just make it worse. Once it was finally removed, I was so relieved. It was absolutely miserable. The rest of me wasn’t too bad. Surprisingly, the part of me that hurt the most was where they took the skin from on my leg. It was like really bad road rash. Other than that, I was generally fine.
So, three weeks post op, how am I doing? I’m doing alright overall. I’m healing nicely. The (my) human body continues to blow my mind with how amazingly it recovers. The hole in my throat is almost closed up, and if you saw the pictures, the opening was pretty big. [I have pics of all of this if anyone wants to see]. Where they took the skin from my thigh has basically regenerated. My surgeon sutured me up very beautifully. The scarring shouldn’t be too bad for most of them with time. I have to work on stretching my mouth more with my Therabite, but I have to be careful of my jaw and not go too crazy with it. My arm is looking a little less emaciated, but I’m generally still immobilizing it with a splint. There are some areas along my hand where the nerves were affected, and on my face there are spots where I can no longer feel anything/have no control over anymore. Also, the swelling in my face has gone down, almost back to normal, and I can be better understood compared to pre-surgery.
I attempted eating some soup once so far. It didn’t go very well. I put about two small spoonfuls in my mouth and managed to swallow maybe half of one. Most of it just got stuck in my mouth. and I couldn’t really taste anything going down. I could taste it more when I burped up afterwards. It’s also relevant to add that most of my sense of smell has gone away. After that attempt, I honestly, just wanted to cry. I felt so defeated, like I’ve come all this way for what? It felt completely pointless. It just felt like one giant failure in the moment. I know there’s some adjustments I’ll need to make and to keep working at it, but there’s a big part of me saying, “If i can’t even taste anything, what’s the point of being able to eat?” It feels like a bigger insult to possibly be able to eat, but can’t taste anything. It’s like the big fat cherry on top of everything the universe decided to throw at me for the past year and a half. (if you haven’t noticed, a bit of my pessimism and nihilism is showing)
I find myself asking, “what’s the point?” a lot more often lately. I’m trying to fight it. I really am, but it’s hard to not feel very defeated after all of that from where I currently stand. Yeah, I’ve come sooooo far, and I’m alive...but all for what? I don’t know honestly...
