It must be what it’s like for people who are in 12-step programs who count days–“it’s been xxx days since I’ve done (or not done) something.” Or maybe those who’ve had a tragedy also count days. Well, I’ve been counting. Today is the 22nd day since therapy ended. The third week ended yesterday. Today is the start of the 4th week. I thought I’d be further along. I was counting on seeing significant improvement during the third week. The good news is that I’ve seen improvement, but it’s minutely measurable, so it’s hard to count.
This morning had a follow up meeting with one of the doctors to determine when to get the PEG removed. For the last three days, I’ve been able to take everything by mouth, nothing via feeding tube. That may seem like quite an accomplishment and it is. However, it doesn’t come without a price. I’ve been making some super protein shakes but getting them down involves several stops, and washing/gargling with salt water to stop the burning before continuing. I’ve also been able to down some liquid soups — from TJ’s boxed black been puree to GV’s great homemade soups pulverized in the blender until drinkable. Still, the process involves breaks and rinses, burning and headaches.
But all for a good cause. Every day are small micro-steps barely measurable, but progress nonetheless. Chewing anything is still out of the question. I’ve got two large ulcers on either side of the tongue that run horizontal along the tooth line. These guys just persist on hanging out like they want to be my friends. I’m trying to will them away. But they make any action by the tongue quite painful. There are also the sores in the back of the throat, but if the tongue got better I’d be half way there.
I’ve also been able to conduct a few meetings, one in person, another over the phone. That’s progress. These too require maintenance, vis-a-vis rinsing every once in a while. Whenever in public I’ve got to take my kit with me–a shoulder bag complete with a bottle of salt water for rinsing, bottle of magic mouthwash for killing the burn, and a few spit cups. As long as I carry this little kit, I can pretty much go anywhere with confidence.
Still, just dreaming of the day I can chew again. I hear people complain about small stuff and I’m thinking, ‘at least you can chew.’ It must be what JK thinks when hearing people complain–‘at least they can walk.’ Everything in perspective.
Back to the doctor’s appointment. He says that I’m really progressing better than most and that I’m doing well in the curve. He says he’s not candy coating the comment. I’m pressing him for days so I can continue counting. He won’t satisfy that request except to say that by a month I should be getting better. I’m on day 22 and a month is 30, so that’s 8 more days doc.
He calls the PEG guy for me and gets me an appointment for Dec 14 in the afternoon. I can get the tube out then. He says that if I’ve gone three days without using it, and I can swallow, then there is no reason I should’t get it removed. I’m agreeing because the tube is a real bother. He tells me, it’s just an out-patient procedure in the doctor’s office. They just yank the tube out. That’s it.
Until then, I’ve made arrangements to go to eastern PA to see some of the family over the holiday. After that we return to NY and I’ll make a trip to Colombia to see if I can help my partner there kick start our business (while I get out of the NY cold).
It’s then the middle of January that I’ll schedule a CAT scan so they can determine how successful they were in zapping what needed to be zapped. Then in Feb another PET CT which is more a full-body base line scan. Patience and positive thought required.