Okay, so it isn't remotely western, and that isn't even funny. Two and a half hours to Portland, two and a half hours at OHSU (most of it actually with doctors even), and two and a half hours home makes for a long day. Thank goodness for Angie and Hannah doing ballet duty, dinner, homework and even making cookies with Karissa. Also, we are thankful for books on tape. Jim Dale reading Peter and the Star Catchers is great except he uses the same voices he used for many Harry Potter characters so sometimes I get confused what story it is.
First a different nurse put us in a room. She asked me if I was okay with her taking my temperature under my tongue. I said, "No, because I don't have a tongue to put it under." She was appropriately embarrassed and said, "I should have looked at the chart." Yes, yes, you should. At least I could speak up for myself. In the hospital at least once a day someone would try to take my temperature in my mouth and I would have to cover my mouth and shake my head. Ah, good times.
At any rate, the speech path was up first today. She was absolutely amazed by the way I speak. She said it is already better than she ever thought it would be. I have S and T, which are apparently supposed to be hard. L, K, and G are non-existent, but those you need to use the back of your tongue to make. She said the palatal prosthesis would help that *IF* it didn't have to be too bulky. She was concerned that if the gap between the roof of my mouth and the flongue is too great, then the prosthesis would be too cumbersome to help. I will have to have some sort of modified barium swallowing test to check. I'm not even sure how that will work.
So on to swallowing. We talked about some of the issues, particularly the fact that stuff is coming up often, which makes it hard to get stuff to go down. It may be that the Dr. cut the little muscle that holds my esophagus closed to allow me to swallow. She will have to check the surgical record. It may also be as Mia hypothesized, that the neck is still so swollen and tight that the esophagus is being pulled open depending on how I hold my head. She was quite impressed with both the explanation and how far I can open my jaw. Score two for Miracle Mia.
I tried several cups of water. She had me turn my head this way and that way. With my head tilted to the right and back I was able to swallow most of a Dixie cup of water. I could not repeat the feat, but it was a start. She encouraged me to practice, practice, practice and try not to be so freaked out about aspiration. I have young, healthy lungs and a strong cough that will push anything out that goes astray. Practicing has never been my strong suit, but I will give it a shot. There is a lot at stake.
On one hand, she said it is unlikely that I will ever be able to swallow more than liquids, but then she said, "If we get you eating and drinking again..." I'm not sure what to think. I have to admit that now that I have the hang of it, I don't hate the feeding tube. If I could learn to eat a little bit, just to have the taste once and awhile, and drink well enough to have a tea or something in a restaurant, I would be okay with that. It is kind of an interesting challenge putting together tube meals that have as much nutritional density packed into them as possible.
She looked in my mouth with a flashlight and asked me to move the tip of my flongue. What? What are you even talking about? Apparently, sometimes the flongue has the ability to move as it is a muscle and it is hooked up to a blood supply and nerves. In some rare instances, it even responds correctly to brain commands. Not like a regular tongue, but some movement. Now I don't know if the burning in the tip and the sensation of movement I've had is really my ghost tongue or the actual flongue. I was unable to move it for her, but now I'm thinking about it. Am I moving it right now, or is that my ghost tongue? I don't honestly know.
The Dr.'s fellow came in. They usually send him in first and then the Dr comes in to check his work. Five seconds in the nurse comes in and says that his ear tube is ready to go. He leaves to go put a tube in someone's ear. I've had that done twice as an adult. It isn't painful as there are no nerves in your eardrum, but it is strange because you can hear them cutting the hole and wriggling the tube in. I told him that when he came back. He seemed amazed at this news. Don't doctors ask patients what it is like? I guess not. No one has ever asked me that, come to think of it. Too bad there isn't some way to simulate the experiences of surgery. I'm betting some people's bedside manners would improve.
His wife is nine months pregnant-- the baby is due in two days. She is a surgeon. She was not only doing a surgery at that moment, she had been operating all day. I can't even imagine that, and I went to school right up to the day Karina was born and was back a week later. How would you even reach the patient over a big pregnant belly? How huge would your ankles be after standing on a surgical floor for hours on end?
He thought I looked great and not very swollen. Well, I don't still look like Admiral Akbar, I'm still no cover girl model, either. Dr. A came in with his head lamp and they both took a poke around in my mouth and pronounced it good. It didn't feel that good as the jabbed around with wooden tongue depressors, but it must look okay. He also didn't seem to feel like the swelling was that bad. "It hasn't been very long." Maybe not to him, but to me it has been almost three months. That is a long time to be swollen. It will go down, little by little, over time. Radiation, the gift that keeps on giving.
Despite writing my questions down, I still managed not to ask them all. Sigh. Why is that? Two hours and I forgot to ask two questions. At least I can email him and he is good about responding. We go back in a month. After that we will look at the swallowing study and possibly the palatal prosthesis. He also told us about a woman he knew who had had a psuedo-tongue made that clipped over her flap. He said it worked well enough that she was able to return to her job as a operating room nurse. Unfortunately he doesn't know of anyone who does that, but it would be worth a try. Hmmm...
A long, grey, wet drive home, of course getting out of OHSU right at five o'clock to enjoy the wonderful Portland traffic. I'm so glad Kelly drives! Pick up Karissa, come home and take care of the dog/cat/chickens and get ready for another day. Tomorrow is the first day that everyone will be out of the house in a month. Not that I don't love my family. I do. I really, really, do. Sometimes you need to be all by yourself for a few hours to recharge. I'll be ready to be together again by after school tomorrow.
Until tomorrow, ood night. I can't say "g".
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