Combining two weeks since I missed a week. Life just keeps going on and I had to RUN to keep up!
Recap based on my notes from all the appointments, and notations in “the book”.
Week 3 – May 13-19
Radiation treatments # 11-15 and Chemo # 4
This was the week we started to realize how up and down this process is going to be. There are good days and bad days, then there are awful days.
The end of this week introduced thrush. Apparently this is par for the course and will come and go throughout treatment. Thrush has been miserable! It coats his mouth with a very thick white coating and makes his saliva super thick, stringy and sticky. His tongue was swollen and sores on the sides. Add this to the sloughing off of the skin in the throat and mouth from the radiation and you have a miserable mouth and throat. Food sticks and liquids irritate. He was prescribed medication and a mouthwash to treat it.
He did pretty good with eating, but is very limited on what he can handle. Meats are a no-go, making him gag. Foods have to be very wet and slippery, so he tried poached eggs that were mashed up into more butter and water. I couldn’t even look at that mess, lol. He managed to force it down that time, but didn’t have the courage to try it again. Some soups go down ok, but the seasoning is usually too much. He can handle a few fruits still, but each day he seems to loose tolerance for more and more. A friend has been making him bone broth and some days he can tolerate it, but some days, not so much.
We were pretty nervous about the Erbitux rash, and whether or not they would take a break from the chemo. The goal was to have it not get worse. When we arrived for chemo they had a few nurses take a look but it was hard to tell. We were able to compare pictures I’d taken from the week and see that it was at least stable. They decided to go ahead with that days chemo since it wasn’t any worse. Praise the Lord!
Week 4 – May 20 – 26
Radiation # 16 – 20 Chemo # 5
This week brought more changes and challenges.
The best news is that the rash is down from grade 3+ to a grade 2 so chemo will continue. He will continue on the medicine to reduce the rash for now. The thrush is getting better but is still bothersome so he’s still on the meds for it.
He is starting to get a sore throat. His uvula (aka the dangly thing in the back of your mouth 😉 ) is super swollen, and it sticks to the back of his tongue and makes him gag even more. The Dr. called it Mucositis… “The painful inflammation and ulceration of the mucous membranes…” The throat pain isn’t too bad yet, he says it feels raw and only hurts when he swallows.
They prescribed another medicine called magic mouthwash. It has 4 medicines in it, an antacid (because a liquid diet can cause reflux) Benadryl to reduce inflammation and pain, Nystatin for thrush, and Lidocaine to numb the mouth and throat. It helps some but not much. Getting it to sit on the throat long enough to numb it is hard. When his mouth is numb he can’t talk because his tongue doesn’t cooperate too well, lol. It only stays numb for about 15 minutes so the goal is to chug his Ensure as fast as he can while it’s numb. This is helpful the 4 times a day he can use it, the other times he just has to tough it out.
The phlegm that comes from the sloughing off of tissue is super thick. Guys, this stuff is so thick. I asked him how I could describe it or what I could compare it to, but he said there are no words. It’s so thick, globby and sticky too. Sometimes he coughs on it so bad, it makes ME gag. Sometimes he gags so bad he throws up. He discovered that swishing with Kombucha has been helpful and he does that throughout the day. All it does is help the phlegm release so he can spit faster and hopefully not throw up. Unfortunately it doesn’t reduce it in general. It’s all “normal” and part of the process, but man it’s hard for him! He feels discouraged that there are three more weeks to go, and people keep saying the last few weeks of treatment, and the few weeks after, are the hardest.
The best part of all this, is that it all seems to be working! His voice is changing and isn’t so muffled anymore, and he can feel that the tumor is smaller. Before, if he pressed on his neck, or even turned his head, the tumor would close his throat. Now he can do both and still make sounds. It’s very encouraging to know it’s all worth it.
As I write this, we are a few days into week 5. I already have much to share come the weekend, things seem to change each day.
We appreciate every prayer, message, comment, meal, case of Ensure, bundle of paper plates and plastic cups and all the other sweet ways people have helped and encouraged!