Tuesday, May 5, 2009
Dilation Procedure IX Update
I had dilation procure number nine last week. Once again it got me back to 15 mm. It appears to be easier and easier to get me to 15 but difficult to move beyond that point. The thinking now it to try to keep on a regular schedule of procedures to see if we can move beyond 15 mm. The next one is should be scheduled 4 weeks from now.
The Carnival Was Back In Town In April
It's been awhile since I posted an update on my swallowing recovery A.K.A Operation Garbage Plate. It's been two months between dialation procedures. Some scheduling issues and a nasty cold got in the way. (Something about wimpy anesthesiologists wanting me to be able to breath during the procedures. Sheesh, picky, picky picky.)
So for the month of March I was pretty much off the leash as far as doctors visits and such go. April on the other hand made up for it. I had another round of CT Scans to start off the month. All negative and as we all know negative is good. (Big time yippee!) It has been a year since treatment ended so the CT scan schedule is going to be every 6 months now. (Once again another yippee for that.) I also met with the oncologist for the 3 month check up. Nothing new there but it was a nice day to be out and about. Then a trip to the dentist. This did turn up a cracked tooth so its off to cap land for me. It doesn’t appear to be related to the cancer but the cancer makes it a bit more delicate to treat so I will be going to a specialist. I did check with the specialist at the Roswell Park Cancer Institute, more on that later, and they did not feel that the crack was cancer related. The dentist did speculate that it may have been due to the rather large cavity I had in that tooth from my sugar laden misspent youth. (No comments from you traildoc. It was the 70's and everyone was expirementing with candy bars in a big way. :-))
Fortunately after the dentist visit I was also scheduled to go to the Roswell Park Cancer Institute. I think I have mentioned this before but I will mention it again. If you have the opportunity to go to one of the major cancer centers that treat your type of cancer you really should. They may just reconfirm everything that you have all ready been told but it is still a worthwhile visit. In my case this is my third trip there. The first was just to confirm the diagnosis even though I had already started treatment. The second time was after treatment ended but before I started dilation procedures and the third time was today. All of the visits were worth it but today was probably the most beneficial. First I got a recommendation from them for a local dentist that they have worked with on head neck and throat cancer patients. If that schedule doesn’t work out or I am not comfortable with that dentist they can handle the crown there. They do them all the time and there are some special considerations for cancer patients. It’s not my first choice to drive 2.5 hours for a few visits for this but it’s nice to know the option exists.
The other benefit was the specialists they were able to bring in on the swallowing front. I should note we did go over the latest tests and once again they used that darn scope thing up my nose. (Someday I have to ask them to let me try it out on them so I can see what the attraction is. I swear every doctor I see that has one, and that is 3, love to use it on me every chance they get. :-). Back to my point. Because all of the specialists are housed in the same area at Roswell it has never been a problem for them to just grab a colleague that specializes in a specific area to chat and review the plan. In this case they brought in a nutritionist that introduced me to the mechanical soft diet. First the just referred to it as mechanical soft and some very odd thoughts went through my head. Then I figured out it was an eating plan for the swallowing challenged. :-) I really wish I knew about this 8 months ago. For anyone with swallowing issues do a goggle search using that phrase and you will come up with lots of good information. The nutritionist also took the time to explain in some detail about different oils, calories and cholesterol. I always knew that different oils had different properties but I have to admit that whole transfat, mono, poly or whatever thing did mystify me a bit in the past. I always felt a bit like the good witch in the Wizard of Oz. Are you a good oil or bad oil? Anyway it was great to get to spend some time with her and just rattle off some of the things I have been eating and get some ideas where they fell in the spectrum of things and look for alternatives.
The real find though was the Speech-Language Pathologist. This person just specializes in swallowing recovery for head neck and throat cancer patients. I brought up the reports from the GI doc doing the dilations and he was able to confirm that we are on the right track but added quite a bit of insight into the process and some great suggestions. One of the things that were recommended was doing the barium tests every two procedures to see how things are progressing and what swallowing techniques can be done to avoid the whole debris issue. For those not in the know that is my uncanny ability to sneeze just about any food out my nose, even when I don’t want to. A nifty party trick but you really need to have the right audience to pull if off. I have only had one barium test performed and that was before any dilation procedures. Getting that scheduled was my first call the next day. Another suggestion he made was on the technique of small bites and small sips of water. Apparently my macho drink as little water as possible approach when eating may have not been one of my better ideas. He didn’t suggest going back to drinking my food but just to have a bit more water when eating. Of course with that misstep there goes my centerfold shot in “Swallowing Monthly” Oh well…
I think the point I really wanted to make was getting second or third opinions about treatment and recovery options is a good idea if you can do it. It may seem redundant but it is worth the effort if for no other reason than to verify that the course you are on is the correct one. When I first went to Roswell Park it was after I started treatment. Some people did wonder why I was putting myself through that at the same time I was perfecting my precision vomiting techniques. Especially when all they did the first visit was confirm the diagnosis and treatment plan. For me it was the peace of mind knowing that I had multiple people concur on the treatment plan. The added benefit is that on the recovery side they have much more experience and are able to offer some good advice and they work well with my local docs.
So April has been a bit busy, nothing like the circus that was treatment, but still lots going on after having March off. Gotta go. There's no line at the ring toss.
So for the month of March I was pretty much off the leash as far as doctors visits and such go. April on the other hand made up for it. I had another round of CT Scans to start off the month. All negative and as we all know negative is good. (Big time yippee!) It has been a year since treatment ended so the CT scan schedule is going to be every 6 months now. (Once again another yippee for that.) I also met with the oncologist for the 3 month check up. Nothing new there but it was a nice day to be out and about. Then a trip to the dentist. This did turn up a cracked tooth so its off to cap land for me. It doesn’t appear to be related to the cancer but the cancer makes it a bit more delicate to treat so I will be going to a specialist. I did check with the specialist at the Roswell Park Cancer Institute, more on that later, and they did not feel that the crack was cancer related. The dentist did speculate that it may have been due to the rather large cavity I had in that tooth from my sugar laden misspent youth. (No comments from you traildoc. It was the 70's and everyone was expirementing with candy bars in a big way. :-))
Fortunately after the dentist visit I was also scheduled to go to the Roswell Park Cancer Institute. I think I have mentioned this before but I will mention it again. If you have the opportunity to go to one of the major cancer centers that treat your type of cancer you really should. They may just reconfirm everything that you have all ready been told but it is still a worthwhile visit. In my case this is my third trip there. The first was just to confirm the diagnosis even though I had already started treatment. The second time was after treatment ended but before I started dilation procedures and the third time was today. All of the visits were worth it but today was probably the most beneficial. First I got a recommendation from them for a local dentist that they have worked with on head neck and throat cancer patients. If that schedule doesn’t work out or I am not comfortable with that dentist they can handle the crown there. They do them all the time and there are some special considerations for cancer patients. It’s not my first choice to drive 2.5 hours for a few visits for this but it’s nice to know the option exists.
The other benefit was the specialists they were able to bring in on the swallowing front. I should note we did go over the latest tests and once again they used that darn scope thing up my nose. (Someday I have to ask them to let me try it out on them so I can see what the attraction is. I swear every doctor I see that has one, and that is 3, love to use it on me every chance they get. :-). Back to my point. Because all of the specialists are housed in the same area at Roswell it has never been a problem for them to just grab a colleague that specializes in a specific area to chat and review the plan. In this case they brought in a nutritionist that introduced me to the mechanical soft diet. First the just referred to it as mechanical soft and some very odd thoughts went through my head. Then I figured out it was an eating plan for the swallowing challenged. :-) I really wish I knew about this 8 months ago. For anyone with swallowing issues do a goggle search using that phrase and you will come up with lots of good information. The nutritionist also took the time to explain in some detail about different oils, calories and cholesterol. I always knew that different oils had different properties but I have to admit that whole transfat, mono, poly or whatever thing did mystify me a bit in the past. I always felt a bit like the good witch in the Wizard of Oz. Are you a good oil or bad oil? Anyway it was great to get to spend some time with her and just rattle off some of the things I have been eating and get some ideas where they fell in the spectrum of things and look for alternatives.
The real find though was the Speech-Language Pathologist. This person just specializes in swallowing recovery for head neck and throat cancer patients. I brought up the reports from the GI doc doing the dilations and he was able to confirm that we are on the right track but added quite a bit of insight into the process and some great suggestions. One of the things that were recommended was doing the barium tests every two procedures to see how things are progressing and what swallowing techniques can be done to avoid the whole debris issue. For those not in the know that is my uncanny ability to sneeze just about any food out my nose, even when I don’t want to. A nifty party trick but you really need to have the right audience to pull if off. I have only had one barium test performed and that was before any dilation procedures. Getting that scheduled was my first call the next day. Another suggestion he made was on the technique of small bites and small sips of water. Apparently my macho drink as little water as possible approach when eating may have not been one of my better ideas. He didn’t suggest going back to drinking my food but just to have a bit more water when eating. Of course with that misstep there goes my centerfold shot in “Swallowing Monthly” Oh well…
I think the point I really wanted to make was getting second or third opinions about treatment and recovery options is a good idea if you can do it. It may seem redundant but it is worth the effort if for no other reason than to verify that the course you are on is the correct one. When I first went to Roswell Park it was after I started treatment. Some people did wonder why I was putting myself through that at the same time I was perfecting my precision vomiting techniques. Especially when all they did the first visit was confirm the diagnosis and treatment plan. For me it was the peace of mind knowing that I had multiple people concur on the treatment plan. The added benefit is that on the recovery side they have much more experience and are able to offer some good advice and they work well with my local docs.
So April has been a bit busy, nothing like the circus that was treatment, but still lots going on after having March off. Gotta go. There's no line at the ring toss.
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