Good update - Thursday

Well, it's Thursday and since Dave has been too busy to update this, I guess I should let everyone know how he is doing.

We went and saw Dr. Debo on Monday - very good appointment, took forever, but we had a good discussion about what Dave had experienced over the previous week. He confirmed what we thought about the steroids and Dave's sense of taste. Essentially the Prednisone (steroid) drastically reduced the swelling in Dave's mouth, which made eating and tasting measurably better. And once Dave was off the Prednisone, the swelling resumed and thus brought back the thick spit, and messed up taste. It also changed the environment in Dave's mouth that allowed the bacteria in Dave's mouth to develop into a yeast infection (thrush), which accounted for the sore mouth, sore and coated tongue, and the white patches on the side of his mouth. We actually have the medication to clear it up at home, just needed Dr. Debo's confirmation on what was going on. So Dave is now on 5 Mycelex troches (lozenges) a day - and it has pretty much cleared up all the infection as I am typing this. Yeast infections have been pretty much a common side effect throughout the past few months of treatment. We have another appointment with Dr. Debo next Wednesday - to check on Dave's progress - to ensure the infection is gone, to see about the status of his ears, since we couldn't ascertain really any progress with his mouth in pain. The MRI did state that he had a mucous retention cyst in his left maxillary sinus, which could be causing pressure on his Eustachian tube, causing the hearing loss, but it is nothing to be worried about. It is a common occurrence, as the radiation has disrupted his lymphatic system in his neck, so his body has to develop other avenues or routes to get rid of or process the fluids. Other than that - Dave's MRI is normal - which is very good news.

So as Dave is sucking on his troche - we are continuing to find ways to keep Dave busy. We started tackling the interior painting with the stairwell and upstairs hallway. Tuesday we put on the first coat, yesterday Dave knocked out all the doors, and today we put on the second coat - tomorrow is all the white trim or we are going to take a break and head out on the water for some fishing or cruising the intercoastal. The weather has been beautiful over the past few days - 70-80's and tomorrow there should be no wind - perfect for the Chesapeake.

Well David just got home from school, and I have to finish removing the tape from the trim. Take care and it is so nice to have Dave back up - almost like his old self.

One step forward, two steps back

We'll here it us Sunday night the 20th of May and I'm feeling like I'm two steps backwards from where I was a week ago. Maybe it was too good to be true, but I was feeling on t0p of the world last weekend.....sore throat was gone, food was tasting good and everything going down the gullet and life was good. Now I'm sitting here with an extremely sore throat, sore tongue and on a scale of 1-10, feeling like a 3. I'm not sure what happened, but as of 3-4 days ago, my mouth and tongue starting getting sore again and the thick mucus came back.
What I'm really worried about at this point is the fact that I may have jumped the gun in getting the feeding tube removed. I'm having a hard time eating food again and now have resorted to only eating soft foods. If this gets too much worse and I get back to not being able to eat food, I'm gonna be sh+t out of luck, because there is no more feeing tube for me to nourish myself.
Marjie thinks I might have what they call "Thrush" which is the presence of creamy white, slightly raised lesions in your mouth – usually on your tongue or inner cheeks – but also sometimes on the roof of your mouth, gums, tonsils, or back of your throat.
A lot of patients who go through head and neck radiation get this. I was prescribe some medicine during my radiation when I was having an issue with the inside my mouth being all screwed, so I decided to start taking it again today.

I see Dr. Debo again tomorrow to review the results of the MRI and to schedule the PET scan. I'll discuss the issue I'm having in my mouth and see what his thoughts are on it. The last time I saw the doctor, he prescribed me a weeks worth of Prednisone. The funny thing is, is that during the week I was on the Prednisone, my mouth, sore throat and thick mucus healed up and that was when I was feeling good. When I was finished with the medicine, my symptoms came back and I'm back to feeling lousy again. Maybe this was just a coincidence...who knows.

So to wrap this up...I'm not feeling as good as I was last week. I'm concerned that I jumped the gun in getting the feeding tube removed. I can't even fathom the thought of going through another surgery to get another feeding tube installed and I'm pretty bummed out that my healing process is taking so long.

More to follow...will see the doc tomorrow morning.