Where has the time gone? We are already in November coming up to the end of the year. As crazy as this may sound with everything that has happened, this year is kind of flying by. I know some of you are probably excited to put 2020 behind you. I am sure 2020 will have mixed reviews depending on who you speak with, but I think we can all have one thing in common by ending 2020 on a high note.
I will have to say this has been a good and bad week. The good news is that the good did outweigh the bad so I am thankful for that.
Let's start with the good. My mouth sores have drastically gone down, which in turn has made my eating and drinking better. There isn't as much that burns my mouth, but I do run across a few things that still do. I am hoping in a week or two that the remaining mouth sores will take a hike. With the mouth sores going down, I was able to hit some peak milestones this week.
I have been able to drink some liquids that have flavor and even a few juices. The carbonated drinks still irritate the remaining sores I have, but that doesn't stop me from trying to see if it hurts. As much as I like to drink water it does become very boring after a while so to be able to incorporate some flavor has been FANTASTIC!!! I feel that I am dehydrated because of my lack of fluid intake, which I know completely falls on me. If I get started on doing something that I get consumed in it and forget to stop and take a drink. At this point, my main goal is to catch up and try to get ahead of the dehydration.
Lately, I have been eating soup because it hadn't burnt my tongue as some other foods have. I do like soup, but when the rest of the family is eating a different meal and the smell hits you in the nostril, well soup isn't the dinner I would've chosen. Don't get me wrong, I don't ask my family to torture themselves to eat and drink everything I have too. That wouldn't be fair to them at all. I am just trying to give everyone some insight into the daily battle.
This week I have set out to reach some goals that I have wanted for a while. YOU HAVE NO IDEA!!! First up, this week I made some eggs with little diced potatoes mixed in with it. I wasn't sure if this was going to burn my mouth, but I had to try. I took my first bite and started chewing. I was waiting for that burning sensation to kick in, but the more I chewed, there was no burning sensation. Holy Crap! This was too good to be true, but could I take this a step further. Could I add a condiment to my potatoes on my next eating adventure? This is a risky one because condiments contain a lot of acids that could easily kill my mouth. On my next batch, I put a splash of mustard and a splash of ketchup to dip my potatoes in. Oh man, I had some water right next to me in case it started burning my mouth. You would think that I was about to take the spiciest one chip challenge, but in reality, we are talking about mustard and ketchup (LOL). I dipped my potatoes in the ketchup and mustard, then proceeded to take the bite. It sat in my mouth for a minute as I processed the situation. There was a slight burn, but nothing that I couldn't push past. We have seen the light folks. This is a pretty big deal for me. As stupid as this may sound to you, being able to add condiments to my food is one thing that I haven't been able to do for a while. That is right friends we are getting ready to punch tickets to Flavortown again.
Oh but wait, there is more! On Friday, we were talking about dinner because our school was having the trunk or treat, which Pamela was going to be at. I was still on a high being able to incorporate a condiment into my food, so let's roll the dice. I was like why don't I order a few pizzas because if I can't eat it, then at least there is enough for dinner and lunch. I put in the order, which was delivered, but we had to head out for the event so none of us were able to eat beforehand. Once we arrived home, we all made a plate. I cut a piece of my pizza (yep, I cut my pizza, don't judge) and took a bite. Oh man Oh man, it didn't kill my tongue and the taste was phenomenal. I have missed eating regular food so much that I can't explain to you how great this week has been just from an eating standpoint. The funny part is I tried a piece of pepperoni, which I liked before my surgery, but now the pepperoni tasted horrible. I asked Pamela how it tasted and she said good so I knew it was just me. I know that my taste will change on certain foods, which I won't know what until I eat them again. Luckily, that was the only part of the pizza that didn't taste the same, but the rest was great.
On Halloween, we were trying to figure out what to eat for dinner. Obviously, Halloween would be slightly different this year with everything going on, but right now I am talking food. We decided to order food from a place nearby that has a variety of food that would satisfy everyone in the family. The funny part is I told Pamela the previous weekend that all I want to do is enjoy a good old cheeseburger. Well guess what, this place had a cheeseburger and I ordered the dang thang. I have had a good week with food so let's just keep it going (that right folks, GAMBLER). I am not a huge fan of bread anymore because it dries out my mouth pretty bad and makes it hard to eat. Our food arrived at the house and we all sat down to eat. The smell of the cheeseburger was so good that I was hoping this wouldn't burn my mouth either. I cut the cheeseburger (yep, I cut my cheeseburger, no bun, don't judge) into small pieces to which I added my condiments. I took the first bite of the cheeseburger and I am pretty sure I heard an orchestra playing. It tasted so good with a little burn but nothing that this tough guy could not handle for the sake of a cheeseburger. It's almost one of those deals that could make you cry because these are HUGE accomplishments this week. I have been thinking about eating normal food for so long and we are progressing in the right direction.
The funny thing is that I am pretty nervous to eat in front of people besides my immediate family. I am self-conscious about the way I look when I eat because I would have to maneuver the food in my mouth, which would require me to keep my mouth open and move my head around to assist in moving the food. I will say that it's not a pretty sight at all. Also, it takes me longer to eat and I don't want people to feel pressured to sit with me while I finish my meal. While we were eating dinner on Saturday, Pamela looks over at me and says you are eating with your mouth closed. I hadn't really noticed because I am have been so used to just eating ugly. She pointed out that I was eating with my mouth closed, which in turn means I look somewhat normal (LOL). It will definitely get better with time, but I am so happy to see where I am today.
My speech has become better since the swelling is coming down from the radiation. People tell me that they can understand me a lot better. My speech will take a while to get back to "normal" because there are words that I struggle to say because I don't have full control of my tongue. I am ok with this because I know over time I will be able to find a way past these obstacles.
So let's talk about the bad. I have been on some heavy medication and I wasn't able to drive. Well, my dummy self was like I am feeling better so let me stop taking these heavy medications. Yes, the doctor told me that I should come down slowly by getting off one, but still take the other and then come off of that one. I like to do stuff my way, which is usually the stupid way. I stopped both at the same time, which that day I felt great. I had little pain and I was like I made the right decision. I was so wrong because the following few days I felt terrible. I felt so anxious, I couldn't sit still or even sleep. I couldn't find a good temperature because I would either be hot or cold. The funny thing is I couldn't figure out why this was happening. I would tell Pamela that I think I am getting sick. It wasn't until Friday when I spoke with my brother that I put the pieces together that it was me stopping the medications cold turkey. In stopping cold turkey, my body was going through withdrawals and I will tell you that it's miserable. I feel tired all the time, my head is cloudy, and I don't feel like doing very much. I literally have to take a nap every day after stopping the medication. The afternoon for me felt like it was 2 am and my body was closing for the day. This weekend I am starting to feel better so my body is starting to move past the withdrawal phase. I still feel anxious sometimes, but it's usually if I sit too long or while I am trying to fall asleep. I am hoping this goes away soon because I hate not being able to sleep. I do still get tired in the afternoon, which I know is from stopping cold turkey, but also I know my body has been to hell and back. My body has a lot of healing to do, which will take time.
I do not have very much patience with myself. I have the patience for everyone else just not myself. Pamela always tells me that don't rush this, your body has been through a lot and it will take time. Yes, I understand, but it's a hard one for me to acknowledge. I am one that tries to push the limits of where I am to what can I do. If I don't push the envelope, then I don't know if it is something I can achieve or not. I do know that my body has taken a beating and with any beating, you have to recover. I have to try and find this balance of not pushing myself too hard and not letting myself off the hook. I make myself sick if I push myself too much and I feel worthless if I don't push myself enough.
The other part of the bad this week was my headspace. I always try to stay positive and strong with all that I have been through. There aren't many times that I let my head go dark because I am so happy to be alive. Let's be real, this could've easily gone the other way to where we were talking about my upcoming death. Trust me, I don't think anyone should take life for granted. In a blink of an eye, everything could change so enjoy every minute you have and the people around you. It did get to me this week though and it festered for a few days. Pamela could tell something was wrong and she would constantly ask me to no avail I would tell her everything is fine. My body language told a different story because I looked extremely depressed. I know part of this was coming off of the medication, but the other half is my head.
In my head, this was the battle going on. What if on my upcoming scan that they find that not all of the cancer is out? What if cancer comes back and it's stronger than before? Will I have a long life knowing that this hit me at 39-40 yrs old? Will my life be normal again? This is the crap that was filling my head. Some people think that this stuff won't happen to them, but you need to open your eyes. THIS IS REAL! I can't be more black and white about this. These thoughts are poison and I try to keep them out, but I am not perfect. Pamela finally got it out of me on what was going on and we talked through it. Then, my brother called me the next day and he followed the same parameters as Pamela. Surround yourself with people that will help pick you up and carry you over that finish line. Sometimes we will hit that so-called rock bottom and having those people around you will help to bring you out of this poison. At the same time, you need to decide how you want to handle it. You can either keep your head in the dark space and allow it to take over or change your thought process and push it out.
After all of this, I truly do appreciate life. I definitely don't take anything for granted and it would be nice to turn back the time dial to tell my younger self to enjoy more of those moments. I know that there is more for me to do and I will keep pushing forward. In conquering these obstacles every week, it shows my family and me that there isn't anything that can hold us back. Set many goals for yourself which are attainable and set higher goals for yourself. Each time you hit those attainable goals it gives you a burst to keep shooting up the ladder to that highest goal you set. Don't let anything get in your way to achieve your greatest self.
As always, I so appreciate everyone for taking the time to read these blogs. Sometimes I will sit at my computer trying to think of what I should write next. I will start typing about one thing and then it transitions into another topic and then it wrote itself. Then, there are times that I will get some ideas from the people around me. One thing I do want to convey is, I am an open book on this whole situation. I truly am here to discuss any part of my journey or if you have questions about any of it, please don't hesitate to email, private message me, text, or phone call. If you are going through this or know someone that needs to talk, let me know. If you or know someone that does tobacco and they have questions or want to talk I am open. You have to understand that this is the main reason for me coming forward with this and being so open. I want to try and help as many people as I can either going through this or get to them before they have to go through this. I respect everyone's confidentiality and would never talk about it on here or with anyone else. I just wanted to throw that out there because I do write these to give everyone an inside look and what this journey looks like. Also, I do this to put myself out there to help people and I don't take it lightly. If there is anything I can do to help, please don't hesitate to reach out.
Keep pushing forward!!