GCCB, sort of, and gearing up for the next test

At dinner tonight I took a step towards getting back to my culinary Nirvana--a green chili cheeseburger.  I grilled GCCBs for Terry and myself and was able to eat about half of it, sans bun.  I am pretty much resigned that I'll never be able to bite down on a burger and a bun at the same time, ever again--but I am still hopeful of being able to eat a GCCB patty by itself, after cutting it into very small pieces. I was able to do that tonight, but had to stop about half way because my jaw got tired from the chewing, and Terry wanted to do the dishes sometime before 10 o'clock--about when I would have finished it at the pace I was going.

But, it sure tasted good, even if it wasn't the full Monty of a GCCB.

The bigger news in all of that is I have not used my tube for feeding since breakfast on Friday--it's now Sunday night.  I have to inject water into it every day to make sure it doesn't clog, but I've managed to eat almost 3 days of meals orally, and have expanded my food options quite a bit.

This is not the start of my official trial to eat 100% orally for 2 weeks, but it has given me confidence that I can have a go at it a lot sooner than I first thought.  I will contact the doctor's office this week so try to get the OK for that to happen, and if given the green light, start my two weeks as soon as possible.  I have a  pretty good idea of what I can tolerate and what I need to avoid, and think I have plenty of healthy options that will let me meet my caloric and nutritional needs during that two weeks, and beyond.  We are traveling the weekend before Thanksgiving and it would be great not to need any liquid chicken on that trip.

So, stay tuned, and I'll let you know when the 2-week clock starts and ask for your Good Vibes to help me through that next test.

Mike

1 Day Without Liquid Chicken

Without really planning to, I went the whole day yesterday with no liquid chicken.  Terry made me pancakes for my Birthday Breakfast--lots of butter and lots of syrup, but if that's what it takes, I'll do it ;)

A fruit blend for lunch, and a yogurt snack when I got home.  Then, for dinner the best thing I've eaten since June 18th--quiche with green chilis in it!  I can't eat the crust yet and it's not a green chili cheeseburger by any stretch, but it was delicious in its own way.

Then, of course, the obligatory 2 glasses of wine while watching the Falcons get the crap beat out of them by the Saints.

(Funny story from the doctor's visit the other day.  The intern examined my mouth and asked me what I had for breakfast that morning--grape juice? Gatorade? He said that my tongue was purple.  I told him, Nope--red wine.  He paused a bit and I then told him I had it the night before--not for breakfast.  He laughed.)  Hey, cancer survivor's humor...

This is not the start of my two weeks to get by without using the feeding tube, but it did show that I can shift more of my eating from the tube to oral feeding--and maybe faster than I thought.

Mike

Passed with Flying Colors!

Meryl, the PA gave a big smile right after I took the first swallow of the test, and said--"no aspiration and good movement of the test liquid."  That stayed the same for the rest of the short test, and the results were very encouraging, and more than a bit relieving after several weeks of lingering doubt.

So, I am safe to start eating more kinds of soft food--even foods that need a bit of chewing before they can be swallowed.  My chewing is still limited, given that I have no teeth on the lower left side of my mouth, and it's difficult moving food around with my tongue--but if I can chew something well enough to get it into little pieces and wash it down with water, I am cleared to do that.  Coming up next--scrambled eggs, syrup-soaked pancakes, tuna salad (hold the celery), fish, and pasta with lots of sauce on it.  Who's better than me?

Meryl says that I can start to wean myself off the liquid chicken as long as I can maintain my caloric input to keep my current weight. I am a very long way from eating green chili cheeseburgers again, but that could happen down the road.

Next goal--getting rid of the stomach feeding tube.  In order for that to happen, I need to not use it for two weeks straight, while not losing any weight.  I am a very long way from that goal--maybe several months--but I am now cleared to start working on it.

As always, our thanks go out to Team Mike for the many Good Vibes and well wishes going into the test today.  You came through again with the best birthday (tomorrow) present I could have asked for.

Mike

A False Alarm and Cramming for my Swallow Test

About 6 weeks ago I felt a very tender spot  in the right side of my mouth, and flicked out a tiny piece of dead bone. It was on the taurus--that bit of bone that protrudes out inside some people's mouth.  I happen to have very prominent tauri. I thought nothing of it until a second spot occurred right after that, a bit bigger than the first.  What crossed my mind then was that ORN was starting on the right side of my mouth.

We got a fast appointment with Dr. Roser, who examined the exposed bone and said that its location is not cause for concern.  Apparently, the soft bone of the taurus makes it a likely candidate for exposed bone--yet another lingering after effect from the radiation treatments.  It may look like ORN, but really isn't.  So, we came away very relieved.  But, with all we've been through, even a false alarm is not a good thing.

Next up--my swallow test on Wednesday.  I've been doing my exercises and eating a bit more food orally to get extra work on my swallowing mechanisms.  At one point I was not optimistic, but lately think that I'll do OK.  No green chili cheeseburgers any time soon, but with all the food I've eaten orally lately--and no problems--I might be able to start shifting more of my eating away from liquid chicken.

Please send Good Vibes for Wednesday, and I'll post as soon as I can.

Mike