Catchy title, right?!
I haven‘t posted a blog the last couple of weeks because there wasn’t a whole lot that was new. I don’t want to bore everyone with a blog that has little to discuss. I am not saying that nothing is going on because I am making progress every week.
We are coming up on Thanksgiving already. It’s hard to believe that we are almost at the end of the year. I can tell you this year has made me more than grateful for the people in our lives. We had so many people come together to provide dinners, took the kids to play with friends, took Pamela out of the house for a break, hands-on wound packing sessions, constant calls and texts to check-in, and everything else in between. We are so grateful for all of you and love that all of you are in our life.
I have been able to eat a lot more lately. I am not gaining very much weight, but now I am at least maintaining the weight I am at now. The crazy part is how my taste buds have changed. Items I loved before my surgery, I can’t stand the way they taste now. It sucks, but those are the changes I can deal with. I haven’t come across anything that I didn’t like but like now. I definitely can’t do spicy food anymore. The slightest amount of spice feels like flames coming out of my mouth and ears. The enjoyment of eating regular food again isn't getting old. I look forward to the meals to see how it will taste in my mouth.
It still takes me longer than everyone else to eat, but that's because I am thoroughly enjoying what I am eating (or at least that's what I am saying). 😉 The one item I have noticed that I struggle with is bread. When I try to eat bread it soaks up any moisture in my mouth, which makes it difficult to chew. This is one item that I have stopped eating.
My energy is hit and miss right now. I do have more energy, but my body is still recovering and will keep regulate itself back to normal. Some days I have the energy to sustain a full day and some I can barely make it past mid-afternoon, which has and will become less over time.
I had lost a good amount of hair on the back of my head. The hair loss came from part of the radiation coming through that area. I didn't realize how much I had lost until I caught a glimpse of the back of my head after I finished radiation. I played with the notion of shaving my head so that it would at least blend in with the rest of my head. I took the plunge and shaved my head. I may or may not go back to hair because so far everyone has liked it.
On Friday, I had my follow up scan and blood work done. I am confident that my dream team took all the cancer out, but I still had that uneasy feeling. I think I will have this feeling with every scan I go to. I have my follow up appointments with my surgeon and radiologist on Monday to go over my progress and scans. We are hoping and praying that we get the "ALL IS CLEAR" message from my team. After this, I will have to go every 3 months for the first year to get a scan done. The first year has the highest probability of cancer coming back so the scans are more frequent.
My speech is improving and improving. There are words that I struggle with saying, but I expected that. I am constantly talking so that I can keep working on my speech to try and get back to somewhat as normal as I can. Work in progress!
Since my last post, I have slowed down to enjoy the accomplishments I have made. I continue to set goals for myself, but I enjoy the moment when I hit a goal. The other day I was thinking about where I was and where I am today, which really has only been 4 months, that I am proud of how far along we have come in that amount of time. Life in general, we move at a rapid pace that we tend to forget and look back at all we accomplished. We tend to keep moving ahead without looking back at the path that brought us here. I am very guilty of doing this throughout the years.
I waited to post because I met with my doctors yesterday to go over my progress and results from the scan. They said my progress is really great. My team always tells me they are in shock at how far and fast I've come. I always take it with a grain of salt because I don't really have anyone to compare it to. I do feel proud of where I am at today and will continue to push forward.
They said that I will keep making progress up to a year out. When I go in there, I always ask questions about things I come across or see if other people experience the same deals. I always try to gauge if I should be further along or ahead of schedule. They told me that my progress is fantastic, but I need to remember that I am only four months out from surgery and a little over a month out from radiation. I can't expect to be back 100% because my body will take time to heal, which will take time.
Now to the biggie of the scans, which I had done Friday. I will tell you that I have been through a roller coaster of emotions waiting for my meeting with them yesterday. Both of the doctors told me that the scan looked great. They said that the scan was clear and showed no evidence of the disease. OH MY GOODNESS!!!!!! The amount of anxiety from the scan and meeting them to get results is rough. After you hear news like this, nothing else really matters at that point. We will definitely be celebrating this news.
They said I will be on surveillance mode now. I will have to go back every 3 months for the first year for a scan because the first year is the highest risk of cancer to come back. After the first year, it goes to every 4 months, 5 months, and then to 1 time a year. This is a BIG WIN for us! I have to do a self-check of my mouth and neck area so that I have a baseline of the new oral cavity so that if anything changes, then I can let them know. I will have to check these two areas every day as well.
This is the new normal for us, but I will take it any day of the week. I am still on earth living life so there isn't too much to complain about right now. I hope everyone stays happy and healthy! Happy Thanksgiving!!!