Updated: Aug 2, 2020
Before the surgery, the doctors go through all the scenarios and outcomes. Also, they try to lay out the road ahead and what that may look like. I will admit that there are people with this type of cancer that have had more radical surgeries than myself. Thankfully, I didn't need to have any part of my jaw taken away, teeth extracted, lose all of my tongue, etc. Here are some restrictions I will have for the first six weeks of post-op surgery:
- I can't lift anything over 8 pounds
- I won't be able to move my neck side to side. I would need to turn my whole body to look.
- I won't be able to drive
- I may have a feeding tube for 2 weeks
- I have to sleep at a 30-degree inclined angle
- I have to sleep on my back and have my head not move to prevent complications
- I will have a trach so I may get it out before we go home or we may have to go home with it
- There are more, but I will spare you the time of listing them all out
Since they would be reconstructing a portion of my tongue, I wouldn't have any feeling on that side of it or any taste buds. I am thankful that I still have the other side intact so that I can still taste the food. I will have to relearn how to eat, swallow, and speak. You don't realize how much you actually do with your tongue. With the new portion of my tongue, my whole equilibrium will be off so I would have to relearn how to maneuver food in my mouth. There will be certain foods I can and can't eat, and bite sizes I will have to adjust to. Here is what I have pictured this looking like in my head. If you have ever seen Christmas with the Kranks, the scene where Tim Allen meets Jamie Lee Curtis in the restaurant after receiving botox in his face and is trying to chew his food, which keeps falling out of his mouth. If you haven't seen it, just google that scene so you can see what I mean.
Swallowing is another aspect because your tongue is what pushes everything back to your throat so that you can swallow. Since I will lose my natural function on the right side of my tongue, this will require me to maneuver my tongue in order to get liquid and food to the back of my throat.
Speaking is another function that will take time for me to full regain. This will take some time because post surgery my tongue will be swollen for a significant amount of time. They said that it will probably take 2-3 months before my tongue will finally come to a non swollen state. I will be working with a speech pathologist.
They took tissue, blood vessels, and skin from my forearm to reconstruct the new portion of my tongue. I was told that there is a possibility that I could lose some function, strength, mobility in this arm, so I had them use my non dominant arm. To replace the skin on my forearm, they took skin from my inner thigh to replace it.
I will go into more detail on each of these when I do another post about post-op living at home. These changes which may seem small will have a big impact on my lifestyle and how I am able to function in the future. Yes, they will try to help me get back to the place I was before, but it will never be my old normal. These are the adjustments that I am happy to make and perfect so that I can continue to live my life to the fullest.
The night before surgery the kids asked if I would take a picture of myself being clean shaved so they could see me.
I had to check-in for my surgery at MD Anderson at 5:15 am on July 14th. Pamela's parents came to our house at 4 am, so that her mom could stay with the kids and her dad could ride with her to take me to the hospital. I arrived at MD Anderson and we said our see you later's, and I headed inside. My surgery was scheduled to start at 7:30 am. After going through all of the questions, consent forms, and marking my surgical sites up, I was ready to go. The team came in my room and began wheeling me back for my surgery.
Once I was in the OR, I fell asleep pretty quickly. Since they would be working in my mouth and neck, I couldn't be traditionally intubated. They had to utilize a trach to make sure my breathing was stable during the surgery, but after surgery as well. Thank goodness that they used the trach because post-surgery, my mouth, and neck were so swollen, that the trach actually by bypassed those parts allowing me to breathe. They also had to place a feeding tube through my nose and down into my stomach in order to administer medication and nutrition.
There are several steps that go into this surgery, I will try to break down each level that I experienced. First, Dr. Pytynia let me know that this surgery would last approximately 8-9 hours, as long as there were no hiccups or complications. Dr. Pytynia would be first up in the surgery, she would cut out the lesion (cancer) on my tongue. I am not exactly sure how much of my tongue she took out, but I would estimate between 1/3 and 2/3 of it. She wanted to get good margins (healthy tissue) all around. After she took out the cancerous part of my tongue, she moved to take out the lymph nodes on the right side of my neck and under my chin. Dr. Pytynia made an incision that went across my jawline in order to take 31 lymph nodes altogether.
After Dr. Pytynia finished up, then Dr. Peirong Yu, from Plastic and Reconstructive Surgery, came in to do his part. Dr. Yu would have the task of reconstructing my tongue, which they call a free flap (hence the name of the blog... lol). Having a free flap means that I would still have range movement in my tongue instead of having it tied to the floor of my mouth which would limit movement. For Dr. Yu's portion of the surgery, my left arm was utilized to get the necessary pieces to reconstruct my tongue. He made an incision from my wrist to the crease of my elbow. They took the tissue and a blood vessel from my forearm to be used in reconstruction and blood flow for the flap. After he completed the reconstruction, he to skin from my forearm to cover my tongue. And then to replace the skin taken from my forearm, he actually took skin from my inner thigh.
I believe he completed my surgery around 3:30-4:00 pm. I woke up in post-op not knowing how it went or how I looked after the surgery. The nurse said everything went great and they would be taking me to my room shortly. They wheeled me to my room and said that Pamela had been called so that she would be up to the hospital shortly.
After this surgery, I didn't have the ability to talk at all so everything had to be typed on my phone or written on a whiteboard. For Pamela to be able to stay with me at the hospital, she would have to be admitted. This meant that she could leave whenever she wanted, but wouldn't be able to come back if she left. Originally, we weren't going to do this because 7 days was a long time for both of us to be away from the kids. We had spoken to Miranda (close family friend) and she had pointed out all of the PROs/CONs of having and not having someone there with me. We changed our minds and decided to have Pamela stay with me since I wouldn't be able to communicate and she would be able to figure out what I needed before anyone else could.
I have posted pictures below so if you have a weaker stomach or don't like seeing anything medical, then I wouldn't keep scrolling down.
The picture below is where they took the skin, tissue, and blood vessel from to reconstruct my tongue. I told the nurse that I need to think of some cool stories to tell about this and she looked at me and said "Don't you think the coolest and best story would be that you beat cancer." I think she beat me on the cool stories. They told me that it will take some time before this area evens out in color and smoothness. There is even a possibility that I could lose some function in my arm.
This picture below was taken immediately after my surgery. The left side is the good side of my tongue and the right lighter color is the new flap. The flap is primarily there for aesthetics. I will never have feeling or taste on that side of my tongue. I will have to re-learn how to eat, swallow, and talk due to losing the right side function of my tongue. I will go into greater detail when I do my post about being at home and what that looks like.
The picture below is the second day after Pamela arrived at the hospital. As you can see, I have the feeding tube through my nose, the trach in my neck with an air humidifier close to it. If you look at my mouth in this picture that is about how much I could close it on the second day.
This was the start of our 7 day hospital stay!