Life at Home - Week 2
On Monday, July 26th, I had my first follow up with my plastic surgeon's office. My speech is still off and it's hard to understand me so Pamela gets to accompany me as my translator. Remember, Pamela wasn't able to come with me on my first appointments so she hadn't been able to meet most of the people. They checked my flap to see if everything still looked good, which it did. The incision on my inner thigh looked good. Then they checked my donor arm to see how it was coming along. It's not pretty, but it was healing as it should. My neck was a little swollen and red, but it wasn't hot or tender so there was no concern. Everything came out as expected on my first follow up appointment.
Eating is the biggest challenge I have to overcome so far. Imagine the size of a bite you normally take of a bowl of cereal, or of steak, a fork full of noodles, or of a hamburger. For me, they have to be cut down to almost 1/4 of a bite. Picture one elbow noodle sitting on a plate (see below), that is the size of bite I can manage at the moment. Think about how long it would take to consume enough to fill you up (no, it is not frustrating at all). I have had to relearn how to maneuver the food in my mouth so something that I have done my whole life feels nearly impossible to do. Eating used to be enjoyable, but now it seems like a chore.
I keep telling myself that I need to work on it to get better. I try to eat soft solid food in order to keep practicing maneuvering my mouth and jaw to get the food back to my throat. It's definitely going to be small steps to get back to normal on this one. It probably seems that I am complaining, which I am but I will say that I feel extremely lucky to even have my sense of taste. Thankfully we caught cancer early because if we didn't, then the outcome of the surgery could've been much worse. If we didn't catch as early as we did then here are some of the things that could've been different:
- I could have had to have part of my jaw removed
- My whole tongue could've been removed
- Some of my teeth could've been extracted
- My flap could've been tied down to the floor of my mouth so there would be limited movement
- The floor of my mouth could've had to been reconstructed
I am very thankful that we caught my cancer when we did. I have to always remember that for everything I have someone has it worse. Before we knew exactly what we were up against, I had to go to each of my appointments with this in the back of my mind. And you can see how this could really affect your everyday life.
I have been continuing drinking the Naked Smoothies but have added protein powder and started eating soups because these are the easiest for me to get down. Thank you, Ashleigh Ross for the recommendation on the protein powder. Ashleigh is our friend that is also fighting a battle with breast cancer. She has been an inspiration to me because I would see her go live and talk about her experiences with her battle, which is one factor that inspired me to come out and tell my story. Also, she has openly been giving me tips and recommendations on so many aspects to try and help my journey become a little smoother. She has truly helped me in all aspects of my journey, which has been a tremendous help. I did speak with Ashleigh and she has offered to help anyone that is going through a similar battle with cancer. If you would like to speak with her, please send me a message and I can put both parties in contact with each other. Thank you, Ashleigh!
I will say this one million times, having someone that is going through cancer, it doesn't have to be same cancer, but having people that are fighting the same fight you are is so crucial to have in your corner. If you don't have someone, then seek out support groups to see about finding people to converse with about what you are going through. I am not saying that the support around you isn't great to have because that is very important as well. What I mean is having a conversation with someone that is going through the same journey you are is different because both will understand exactly what each other is going through emotionally, physically, and mentally.
The issue Pamela and I are having this week is sleeping. I have to sleep at a 30-degree incline, on my back, and my head has to stay in a neutral position. The reason for this is because the blood vessel that they took from my forearm is used to supply blood to my flap. If my head slides to the right or left, then there is a potential that the blood supply could be cut off, which would compromise my flap. I will wake up multiple times and catch myself moving or Pamela will wake up and tell me that I need to reposition. This obviously makes for many sleepless nights.
We are trying different ways to keep my head from moving, but not much has worked. It's hard to predict what your body is going to do when you fall asleep. On Saturday I took a nap on the couch, which we figured that this would be the best to keep my head from moving. The cushion is on one side and I can put a rolled-up towel on the other so my head doesn't move. The only thing we have to do is get a 30-degree angle and then it's off to the races. Once I get to 6 weeks post-op, then I will be able to sleep however I want, but we are not quite there.
This week was pretty uneventful. Saturday morning I decided that I wanted to try and eat a pancake. I made myself a small pancake and put syrup on it so that it wouldn't be dry. I started eating the pancake, which tasted so good. By the time I finished the pancake, it had taken me almost an hour. Even though it took me an hour, this was a HUGE win. I hadn't finished anything besides soup and smoothies for the last week. In life, we need to celebrate all the victories even if they are small. These wins are the ones that will continue to drive us to keep pushing ourselves. Coming up in the next week we have a follow-up appointment with my main head and neck doctor, we meet with my radiation oncologist, and I have to get some blood drawn.
This is the pancake that I CONQUERED! It's like a smaller version of a big pancake.
On Sunday, Pamela noticed that my incision on my neck was swelling. It wasn't warm to the touch and it was not painful either. We kept an eye on it all day because we knew that we would be seeing the doctor the next day. I wish I would've taken a picture, but it looked like I was carrying a baseball in my neck. We will continue to watch that closely.
From one boring week to a more exciting week coming up in Week 3.