I finally had my swallow study on Friday and I have to say I was pretty disappointed with the results. I did only slightly better than I did on the test I had in November. First I'll explain how the test works. They have you swallow various textures of food with barium attached to it and follow it on a x-ray screen. You start with a thin watery liquid, then move to a pudding-like texture, and finally on to more solid textures. On the video screen they can watch the operation of your throat and make sure everything is functioning the way it should. Unfortunately I never got past the first step of watery liquid. I took about one-half teaspoon of it and swallowed but only a very small portion of it actually went down. The majority of it stayed in some small pockets in my throat. The therapist had me do some things like press on the sides of my throat and turn my head to one side then the other which helped, by doing that I was able to "milk" some more of it down but only a little at a time. The strange thing is I couldn't feel any of this going on while I was swallowing, to me it felt like everything was normal. It was only afterwards when they showed me the video x-ray that I could see it. It was fascinating and disappointing all at the same time.
I also learned that that the throat dilations I went through really did nothing to help with this problem. I definitely would have needed the dilations eventually but the area that they help is further down the pipe than where I am having my problem causing the aspirations. I hope I explain this correctly, as I am not 100% clear on it, but what I understand is that when you swallow there is a muscle that pulls your esophagus forward so it closes off your larynx (windpipe), which prevents food or liquid from going down the wrong pipe. The scar tissue caused by radiation that is in my throat is preventing the esophagus from moving forward and closing off the larynx.
So - what now? Based on what she saw on this study the therapist gave me different exercises to do that should help me swallow a little better. She said it looks like I will never be "normal" but that we should be able to get me to a point where I can eat some things again. I am supposed to report back to her in a few weeks with how I am doing on the exercises and then we will make a plan on where to go from there. Kind of a kick in the pants to end my week!
I also had my PET scan last Wednesday and finally talked to the doctor (my oncologist) about it on Monday. I have not seen the report yet so I don't have the full details but I did learn a few things. First off you know I have been complaining about increasing hip pain. The doc said they definitely see increased tumor activity in the hip joints and he wants me to see a radiation specialist again to see if they think radiation would help ease the pain. They also need to see if it is in an area that was radiated before because then they may not be able to do it again. If this sounds familiar it should - I have been through this same cycle a couple times before.
To help me out in the meantime the doc increased my pain medication AGAIN - I'm starting to feel like a doper. Since I have been hurting so much for so long I asked about seeing a pain specialist and they set up an appointment for me next week. I don't know what these specialists do or if they have non-drug ways of relieving pain but I guess I will learn next week. I figure seeing an expert can't hurt!
We also talked about getting back on the sorafenib again, as the thyroglobulin and TSH levels in my blood are increasing which is bad. He is going to consult with the other docs to see if I can be on the drug simultaneously with the other treatments I am looking at. Hopefully he will have answers for me by our appointment next week.
So looking forward - next week I have a few appointments that will determine the course of action I will be taking over the next few months. Lots of decisions to be made again. Please keep me in your prayers if you are inclined to pray or at least send good vibrations my way!
Be Well - Be Blessed!