Certainly hope it doesn’t remain this way, but I’ve taken to drinking. I haven’t chewed up and swallowed whole food in almost a month. It’s a liquid-only diet. Mostly protein-type drinks, but occasionally an evening soup. Boooorrring.
Dr. Rad did do sort of a conference meeting, calling the other doctors in the group to discuss my condition. The long and short is:
- a certain percent of those who receive external beam radiation have recurrent symptoms (from the radiation) about six months later which last for a period of time and then are gone. It looks like I fell into this lucky group. The swollen left side of my tongue is proof.
- a certain percent of those who receive external beam radiation end up with lymphedema. It also looks like I’ve fallen into this group. My fat neck and the bulge above the dissection scar is proof.
- a certain percent of those who receive eternal beam radiation for head and neck cancers end up with nerve pain in the head. The searing head pains I’ve been having is proof that I’ve fallen into this group.
- it appears that on the unhealed spot where the tumor was on the base of my tongue, an ulcer has developed, which is making swallowing extremely painful.
So all these things have been and are happening at once. What am I doing? Well, I’m back on pain meeds, as much as I hate them, and now, nerve pills to try to tame the shooting pain through the head. For the lymphedema, I’m going to a therapist three times per week to see if it can be worked down somewhat. In addition, I have a bunch of exercises I’ve got to do a few times per day. For the ulcer, the only thing I can do is keep it clean and hope that it heals soon — lots of rinsing and gargling. For the swollen tongue and mouth, I’ve just got to sit it out.
Read recently that 70-80% of all doctor visits are non-health related. Before this entire throat tumor episode, I hadn’t been to a doctor except for required visa tests. But I assure myself that my visits are health related when I see the picture of the ulcer taken from the camera snaked down through the throat from the nose. Or when I see the little bulge from the PEG hole that wasn’t there before. Or, when I look in the mirror and see the left side of my tongue larger than the right, the swelling of which is preventing me from eating. Or, the head pains that sometimes sit me down with my head between my hands.
But through all this, I feel lucky, and happy in a way. I’m happy that I can talk. I’m happy to have a tongue. I sure would like to eat again, but I’m sure that nugget will reappear. And I’m also happy to have gotten out today for a nice leisurely 20 mile ride loaded down with my computer, books and a cooler. Giving thanks for the simple pleasures. I’ll drink to that.