Life at home - Week 3
It's Monday, August 3rd, I can't believe we are in August already. Today is a pretty big day because it's my follow up with my main doctor and my radiation oncologist. My first appointment is at 7:30 am to get my blood drawn. These types of appointments are always nice because they don't take long and we are usually in and out.
My next appointment is with the radiation oncologist. Pamela and I are pretty certain that I will have to get radiation, but we don't know for sure. They will go over the surgical pathology report with us so we have a better understanding of what we are dealing with. They had negative margins on the portion of my tongue they took out. This means is they took enough of my tongue out that the outer margins don't have cancer. Even though they took out all of cancer, there was a nerve that cancer penetrated. Since there was a nerve involved, then they highly recommended radiation. We asked what the odds were of recurrence if we didn't do radiation. He said that if we didn't do radiation, then there would be a 30%-50% chance of it coming back. If you do radiation, then you are looking at a 0%-5% chance. Obviously, I said I wanted to do the radiation.
You are probably asking yourself, was that even an option or why would you ask that question? Let me give you a brief rundown of radiation and what the possible side effects are from it. Radiation comes from a machine that delivers radiation to a specific point to eliminate any remnants of cancer. Pretty easy non-layman terms. I am sure my nurse friends and doctors could give a lot more detailed version of that. My radiation will probably start in 3-4 weeks. It will be for 6 weeks Monday-Friday, which I will meet with my care team every Wednesday to discuss any difficulties or pain so they can adjust how to take care of me.
Here are the possible side effects that come with radiation in the mouth:
- Permanent dry mouth
- Losing taste dramatically. Dramatically changed taste means that you have to heavily salt or
season food in order to get a taste from them.
- Have to rinse with fluoride daily for the rest of your life because your salivary glands will stop
producing saliva, which naturally produces fluoride.
- Any dental work I would need in the future like teeth extraction and so forth can pose to be
challenging because having radiation in my mouth over time will affect my bone density in my
- Mouth sores during the treatments
- Sunburn on the outer part of my skin
- Difficulty swallowing
- There are more, but I think you get the point.
My next appointment is with my main doctor. They check everything out on me, which looks good. Remember in the last post I had mentioned my neck looking like I had a baseball in it. She had said that this concerned her so she wanted to get an ultrasound on it to see what was going on. She was sure it was an infection, so I was prescribed an antibiotic to start fighting it. The earliest availability to get an ultrasound was tomorrow. We would figure out what route to go after the ultrasound. In the meantime, I started taking the antibiotics.
We left the hospital and felt good about the appointments. When we got home I was pretty tired so I took a nap. Even after the nap I still felt tired the rest of the day. I even went outside to take something to the trash and got light-headed. Ever since being home from surgery, Pamela and I go on walks every evening and I have had more energy post-surgery than I did before. I was a little confused as to why I was feeling like I did. We finished out the day and went to bed. The next paragraph is going to be gross but I am going to be as real and candid as I can be about it.
I fell asleep on the couch because that has been the best spot to keep my head from moving. Pamela decided to sleep on the other couch that night as well. We both fell asleep around 10:30 or 11:00 pm. As I am sleeping, I feel myself scratch next to my trach incision. I immediately woke up thinking I scratched my trach incision. I see on the clock that it's 3:00 am. I look at my hand and it looks like it's all bloody, so I am starting to freak out thinking I really screwed something up. Also, I start feeling something running down my neck and it's moist on the back of my neck. I call out to Pamela saying I think I scratched open my trach hole and I am bleeding pretty bad.
Pamela runs over to the kitchen to get some paper towels. She comes over and pats by my trach hole and neck. She has me get up and come to the kitchen. As I am standing in the kitchen I begin to think to myself why does this stink. Pamela looked and said this isn't coming from your trach, but it's coming from your neck incision. She said the ball in your neck has almost completely gone down. I walked back over to the couch and the pillow I was using was covered with the fluid that came out of my neck. I am not going to lie, this was one of the sickest things I have dealt with ever. From 3 am to 9 am, the oozing didn't stop.
The pictures below are of the wound at 3 am. See how there is no baseball-sized ball in my neck?
I contacted my doctor's office when they opened to see what the next course of action was. The nurse asked me to send them pictures of my neck. She said let me talk to the care team and I will call you back. Ten minutes later we received the phone call from the doctor's office, they said we would like you to go to the Emergency Center at MD Anderson. They told me to plan on staying a few nights so that they could make sure that the infection is taken care of. This is important because the infection is close to my flap and could potentially be harmful to the recovery of the flap. So once again, Pamela's parents came to the house and her dad took me to the hospital.
My view for the next 5 days.
I went to the ER at MD Anderson so that I could get this infection taken care of. I arrived in the ER at 11 am, they took my vitals and went over my information. They placed a call to my team in head, neck, and plastics so that they can come to look at my neck. The ER started me on a course of antibiotics and gave me the other regular meds that I was taking at home. The doctors arrived at 1 pm, looked at the infection, and said if it is topside, then they will be able to flush it at the bedside. If the infection is deeper, then they would have to remove the infection surgically. I was hoping for the bedside flush because I didn't want to go through another procedure.
This is my excited face to be back in the hospital!
The team ordered a COVID test and gave orders not to give anything to me by mouth. I began to get nervous because these orders are similar to the ones I had before surgery. Then they ordered a CT scan to see exactly how far the infection had gone. I did my CT scan and came back to the room to wait for the results.
Around 3 pm, my plastics team came down and said it looks like the infection is topside so we are going to flush it out bedside. They opened up my incision a little bit more so they could get up towards my jaw to flush out the infection. They did the flush for about 30 minutes and then packed it with gauze. The crazy thing is that I had all of that done with no numbing medicine. Since the surgery, the nerves on the right side of my neck are still damaged and is still numb. The only thing I can feel is pressure in that area, but it doesn't hurt.
I was in the ER until 7 pm when they took me up to my room on the 22nd floor, which is the head and neck floor. It sucks to be back, but I was excited that I may get to see the nurses that took care of us the first go-round. I didn't walk around the first night because I was tired of being in the ER all day, so it was a stay in the room night.
I woke up the next morning and had to get my meds and eat breakfast. I was like a kid that wanted to go see their presents on Christmas morning. I was excited to see if anyone was here on the floor. For Pamela and I, all of these nurses that took care of us hold a special place in our hearts. They treated us so well while we were here. I walked out of my room to start my stroll around the floor. I ran into many of the nurses that took care of us the first time around. They usually never get to see patients at the point I am now, so they were able to hear me speak and see the donor site on my arm. A few of our favorite nurses had me FaceTime Pamela so that they could say hi. There were so many people that I saw from nurses to the patient care team. Just know that for both my visits you all made us feel like part of the 22nd-floor family.
Also, this week I started doing my facial, neck, and arm exercises in order to get full range movement and strengthen my muscles back up. The exercises don't take a lot of time, but I need to do them 3 times a day. Here are the exercises that I need to do 3 weeks after my surgery:
They put me on a full liquid diet, which was ok at the start, but you run out of options pretty quickly. Most lunches and dinners I would have the chicken puree, apple sauce, milkshake, and water. For breakfast, I would have oatmeal or grit puree, apple sauce, yogurt whipped, coffee, and apple juice.
On Wednesday, I was walking the floor and there was a gentleman with his wife walking around. I could tell he had surgery recently and it was probably similar to mine. We walked around a few times and I noticed he had a red cap on his trach. In my previous post, I had spoken about the day before we got to leave on my first stay that they capped my trach off to see if I could breathe on my own for 24 hours. We were getting ready to pass each other and I said "How does it feel to have your trach capped off?" He said I laughed when they first capped it off. We started chatting and we talked about what we were in for (like prison lol). He had cancer on the right side of his gums. We talked for a while and then parted ways. The next day I was walking and my nurse, who was actually both of our nurses, came to me and said he was leaving today. I said, "Where are they because I would like to tell them bye?" She said, "Well I think they were looking for you too, so let me go tell them and you can come to his room." I went over so that we could all say good-bye. We swapped numbers so that we could keep in touch and talk about the victories and difficulties we were going through. I am a little further along than him, so I said if you have any questions please don't hesitate to reach out. They live in a different state, but it's good to have someone to talk to that is going through the same fight with you.
On Thursday and Friday, I am just trying to find many ways to pass the time until I get discharged on Saturday. I ventured on many walks around the floor to where everyone jokingly wanted me to wear their step trackers. Pamela and I wanted to show the staff our appreciation for taking care of us on both of my stays in the hospital.
I was finally discharged on Saturday, so I was able to go home and spend time with the family. It felt so good to be back in our house and finally get some needed rest as well. Pamela gets the task of having to pack my neck with gauze two times a day until the pocket closes. We had a friend come walk her through it the first time and Sunday Pamela changed it all on her own. She did a fantastic job. I am so proud of how she has been able to take on these different tasks that are put in front of her. She truly amazes me because never in a million years would you think of having to change dressing from a neck wound, but she does it like a champ.
On Sunday, Pamela even mowed the lawn, yes I will say it again, Pamela mowed the lawn. For everyone that knows Pamela, she likes to be in the outdoors relaxing. Today she laced up her shoes and went to town and conquered the lawn with my guidance from the sideline. To say I had another proud moment is an understatement, she has truly been amazing me, jumping in and knocking out these tedious tasks.
Let's see what week 4 has in store for us!