Dilation procedure number XII was scheduled for today but due to a nasty head cold it had to be cancelled. Something about wanting me to be able to breath while under sedation. Picky people.
Aside from the normal downsides to having a head cold not being able to swallow properly adds another dimension to the problem. There aren't many things that I can just wolf down without a severe debris issue. I decided that maybe it was time to revisit some foods I tried back at the beginning and to see if they would work better now. Enter Captain Crunch cereal. This actually works reasonably well as long as I take small spoonfuls. The nice thing about this cereal is that is crunches into nothingness in your mouth quickly. As long as I take the time to chew it properly it doesn't have that much of a debris factor. I can't eat it as fast as I would like but it is something I don't have to spend anytime making. This opens up a whole new area of opportunities for eating in the morning. My normal routine is to take about 15-20 minutes making something that I then take 20-30 minutes to eat. As you can imagine with a head cold that gets to be a drag. Now I can browse the kids cereal section at the grocery store and hopefully have a wide variety of options. Next up Crunchberries! BTW in case anyone didn't know they aren't real berries. Check out this story. Apparently Froot loops don't contain any real Froot either. Go figure.
Thursday, November 12, 2009
Tuesday, November 3, 2009
Field Trip Cancelled
Unfortunately this weeks field trip to The Roswell Park Cancer Institute was cancelled at the last minute. I arranged to have my last swallowing evaluation faxed over and called today to make sure it had arrived. They called back to let me know that the doctor I normally see was no longer there and I would have to reschedule with another doctor sometime in December or January so no road trip tomorrow. :-(
Thursday, October 15, 2009
18 Month Update
Last week I had my 18 month CT Scan. It came back negative and as always in this case negative is good! Big time yippee! for that. I won't have another CT Scan until the 2 year anniversary. That is the next big milestone.
Operation Garbage Plate Update
I go in for Dilation Procedure XII in a few weeks. Hopefully we can start moving forward again. I did learn an interesting item about the esophagus and dilation procedures. Apparently the section that I am having dilated is more fragile than other parts of the esophagus. This could explain the caution that they are taking with the procedures.
I have been able to expand the items that I can eat at home. I am revisiting some of the early skirmishes of Operation Garbage Plate. There are items that I tried at the beginning of the year that I am retrying now. One item I tried awhile ago was a Wendy's Jr. Bacon Cheeseburger. This is arguably the best value priced hamburger on the market. So feeling particularly adventurous one day I decided to give one a try. Amazingly enough I could sort of kinda eat one. (Sorta kinda meaning 20-30 minutes, lots of water and some coughing. :-)) Finally, calories the old fashioned way via fast food. Unfortunately the nearest Wendy's is 20 minutes away so it isn't really convenient. Not wanting to ignore the siren call of the Jr. Bacon Cheeseburger I took a page out of Sponge bob and decided to duplicate the Krabby Patty, I mean Jr. Bacon Cheeseburger, formula. (Bonus points to any adult that knows who Mr. Krab's nemesis is.)
Next time I was in the vicinity of Wendy's I picked up another one of these culinary masterpieces and took it home to dissect it and see what the secret formula is. Note to all you hamburger right activists out there the burger in question was reassembled and eaten as intended so no hate mail please! What I discovered changed the way I assess food to see if I can eat them. The problem I have had in the past with burgers has been twofold. First is the size. It seems that for the most part the standard size is a quarter pound burger with the third pounder rapidly gaining on it. Those have been out just because of the size and in particular the size of the bun. I have tried a regular McDonald's cheeseburger but the problem with that was no matter how small of a bite I took it would reassemble into a plug in and as the saying goes "What goes down must come up..." You can imagine the rest.
The Wendy's Jr. Bacon Cheeseburger didn't have that problem. There is the whole debris thing but I expected that with the bacon, lettuce and tomato components. I normal try to avoid that stuff. Instead what I found is that those components were what kept the Jr. Bacon Cheeseburger from reassembling as a plug. It is just enough that when chewed properly I can swallow in small amounts without plugging my esophagus. The other thing I found is that Wendy uses a 2 ounce thin square patty, thin sliced bacon that is cooked soft, ketchup on the bottom and mayo on the top along with the bacon, lettuce and tomato. This combo works for me and also tastes pretty good. One thing I can say about Wendy is that gal knows her way around a grill!
Now that I have unlocked the secrets of Wendy (Jr. Bacon Cheeseburger that is) I have been able to duplicate it at home. I add a bit more mayo, sometimes I skip the lettuce, the tomato seems to be the key component here, but otherwise I keep true to the original burger masterpiece. My home version comes out pretty good and is actually easier to eat. I have more mayo on it and as is the case with bacon everything tastes better with mayo. The only downside is the prep time but what I have done is create my own patties (I can't seem to be able to buy anything smaller than quarter pound patties) and freeze them. I cook the bacon up in advance and store it in the refrigerator. This way I can put it all together and eat it in about 30 minutes. That is around 400 calories in a half hour and that is ahead of my minimum of 600 per hour.
Whats Up Next
I have another dilation procedure coming up in the next few weeks. I am also off to Roswell Park in the beginning of November. While pursuing the dilation procedures I also want to see what can be done about some other problems with swallowing. One of the problems is what I call the debris issue. I think this is related to the epiglottis not moving the way it should when I swallow. Hopefully they will have some ideas to help move this along. The debris issue is rapidly becoming more important and rather than wait until I am done with the dialation procedures I thought I would pursue that issue at the same time.
Operation Garbage Plate Update
I go in for Dilation Procedure XII in a few weeks. Hopefully we can start moving forward again. I did learn an interesting item about the esophagus and dilation procedures. Apparently the section that I am having dilated is more fragile than other parts of the esophagus. This could explain the caution that they are taking with the procedures.
I have been able to expand the items that I can eat at home. I am revisiting some of the early skirmishes of Operation Garbage Plate. There are items that I tried at the beginning of the year that I am retrying now. One item I tried awhile ago was a Wendy's Jr. Bacon Cheeseburger. This is arguably the best value priced hamburger on the market. So feeling particularly adventurous one day I decided to give one a try. Amazingly enough I could sort of kinda eat one. (Sorta kinda meaning 20-30 minutes, lots of water and some coughing. :-)) Finally, calories the old fashioned way via fast food. Unfortunately the nearest Wendy's is 20 minutes away so it isn't really convenient. Not wanting to ignore the siren call of the Jr. Bacon Cheeseburger I took a page out of Sponge bob and decided to duplicate the Krabby Patty, I mean Jr. Bacon Cheeseburger, formula. (Bonus points to any adult that knows who Mr. Krab's nemesis is.)
Next time I was in the vicinity of Wendy's I picked up another one of these culinary masterpieces and took it home to dissect it and see what the secret formula is. Note to all you hamburger right activists out there the burger in question was reassembled and eaten as intended so no hate mail please! What I discovered changed the way I assess food to see if I can eat them. The problem I have had in the past with burgers has been twofold. First is the size. It seems that for the most part the standard size is a quarter pound burger with the third pounder rapidly gaining on it. Those have been out just because of the size and in particular the size of the bun. I have tried a regular McDonald's cheeseburger but the problem with that was no matter how small of a bite I took it would reassemble into a plug in and as the saying goes "What goes down must come up..." You can imagine the rest.
The Wendy's Jr. Bacon Cheeseburger didn't have that problem. There is the whole debris thing but I expected that with the bacon, lettuce and tomato components. I normal try to avoid that stuff. Instead what I found is that those components were what kept the Jr. Bacon Cheeseburger from reassembling as a plug. It is just enough that when chewed properly I can swallow in small amounts without plugging my esophagus. The other thing I found is that Wendy uses a 2 ounce thin square patty, thin sliced bacon that is cooked soft, ketchup on the bottom and mayo on the top along with the bacon, lettuce and tomato. This combo works for me and also tastes pretty good. One thing I can say about Wendy is that gal knows her way around a grill!
Now that I have unlocked the secrets of Wendy (Jr. Bacon Cheeseburger that is) I have been able to duplicate it at home. I add a bit more mayo, sometimes I skip the lettuce, the tomato seems to be the key component here, but otherwise I keep true to the original burger masterpiece. My home version comes out pretty good and is actually easier to eat. I have more mayo on it and as is the case with bacon everything tastes better with mayo. The only downside is the prep time but what I have done is create my own patties (I can't seem to be able to buy anything smaller than quarter pound patties) and freeze them. I cook the bacon up in advance and store it in the refrigerator. This way I can put it all together and eat it in about 30 minutes. That is around 400 calories in a half hour and that is ahead of my minimum of 600 per hour.
Whats Up Next
I have another dilation procedure coming up in the next few weeks. I am also off to Roswell Park in the beginning of November. While pursuing the dilation procedures I also want to see what can be done about some other problems with swallowing. One of the problems is what I call the debris issue. I think this is related to the epiglottis not moving the way it should when I swallow. Hopefully they will have some ideas to help move this along. The debris issue is rapidly becoming more important and rather than wait until I am done with the dialation procedures I thought I would pursue that issue at the same time.
Saturday, August 22, 2009
Operation Garbage Plate Update
Last Thursday was dilation procedure XI. Unfortunately this one didn’t move me any farther past 16.5 MM. However there has been an exciting new discovery in my quest to swallow. Up to now snacking was pretty much limited to a select group of cookies with lots of water. The plus of this was they were and are one of my go to portable temperature stable foods. The downside is that sometimes when you are just hanging out watching TV you would like to have a more typical snack food… say popcorn. Currently popcorn is not one of those things that I can really eat. Every so often I will attempt a few kernels but it never ends up well. Not well in this case means cough fits followed by random particles coming out my nose the next hour. Once again not quite as popular as you would think in a group setting.
Now enter into the picture Chesters’s Puffcorn, butter flavor of course. These are butter popcorn flavored and shaped puffs that have a similar texture to cheese puffs. I was at someone’s house the other night and these were there so I thought what the heck and tried one. Sure enough taken one at a time I can actually eat these. They dissolve in your mouth. They have a butter popcorn taste without the swallowing downside of real popcorn. That Chester guy really knows what he is doing. They are not all that great in the calorie department but they are still a plus.
Another recent discovery is the Starkist lunch packs. These are packages designed to be a lunch kit. They come with a small can of tuna, package of mayo, package of relish, some crackers and a spoon to mix it with. You just open up the can, add in the mayo and relish and mix it up. Then put it on the crackers. My initial intent was to just eat the tuna, that I can sort of kind of do. Instead being the daredevil that I am I gave the crackers a try. They had just the right stale texture that kept them from reforming to a plug in my mouth when eaten along with the tuna. I was able to eat the entire package. By package I mean the food items, not the spoon and container. Admittedly it took about a half hour and fell below my normal per hour calorie goal but it still broadens the list of portable food items that I can eat. Way to go food engineers with the specially formatted long shelf life semi stale crackers. Hmmm… I wonder if they could use that in an ad . (Note to self: Contact Starkist with new ad campaign idea.)
Now enter into the picture Chesters’s Puffcorn, butter flavor of course. These are butter popcorn flavored and shaped puffs that have a similar texture to cheese puffs. I was at someone’s house the other night and these were there so I thought what the heck and tried one. Sure enough taken one at a time I can actually eat these. They dissolve in your mouth. They have a butter popcorn taste without the swallowing downside of real popcorn. That Chester guy really knows what he is doing. They are not all that great in the calorie department but they are still a plus.
Another recent discovery is the Starkist lunch packs. These are packages designed to be a lunch kit. They come with a small can of tuna, package of mayo, package of relish, some crackers and a spoon to mix it with. You just open up the can, add in the mayo and relish and mix it up. Then put it on the crackers. My initial intent was to just eat the tuna, that I can sort of kind of do. Instead being the daredevil that I am I gave the crackers a try. They had just the right stale texture that kept them from reforming to a plug in my mouth when eaten along with the tuna. I was able to eat the entire package. By package I mean the food items, not the spoon and container. Admittedly it took about a half hour and fell below my normal per hour calorie goal but it still broadens the list of portable food items that I can eat. Way to go food engineers with the specially formatted long shelf life semi stale crackers. Hmmm… I wonder if they could use that in an ad . (Note to self: Contact Starkist with new ad campaign idea.)
Thursday, June 11, 2009
Procedure X A Success!
Today's dilation procedure kept to the idea that important anniversaries, predictions for cataclysmic events and good things happen in numbers easily divisible by 10. After being stalled at 15 mm for the last 8 months or so things moved forward today and they were able to dilate the esophagus to 16.5 mm. (A 21% improvement in volume) The ultimate goal is of course to get to somewhere greater than 20 but if the next few are successful I may be able to get there by fall.
I also had my PEG tube replaced today. They still won't let me get rid of it and the balloon burst on the one I had. Now I have a for real mic-key button tube. My model had been discontinued.
Now I am plotting what to try my new found capability on.
I also had my PEG tube replaced today. They still won't let me get rid of it and the balloon burst on the one I had. Now I have a for real mic-key button tube. My model had been discontinued.
Now I am plotting what to try my new found capability on.
Thursday, June 4, 2009
Hot Dog Therapy: Operation Garbage Plate Update
Last week I met with the radiation oncologist. Once again the scope came out and once again up the nose it went. (No matter how many of those I have done I will never get used to them.) He confirmed that at this point the cancer is still gone. Big time yippee! on that. We also discussed the swallowing disorder a bit.
He got a copy of the speech therapist report on the swallowing evaluation and a new term was introduced. Pharyngeal Dilation. Along with the esophagus there is also an area above it that is constricted. Thus pharyngeal dilation. I haven't done much research on this but it is next up on my question to the ENT doc.
Hot Dog Therapy
When I first started on operation garbage plate I was focused primarily on the esophagus opening. Initially just drinking water in any amount was a challenge if not impossible. One thing I would try to do is drink a bit more than I can handle (water that is not adult beverages!) and see if I could force it down with a hard swallow. I could feel some discomfort / slight pain when I did this but in the end it really didn't help make swallowing any easier. Every now and then I would give it another try without any results.
After the swallowing evaluation I started to wonder what I could do to move the epiglottis. Then it hit me, maybe that was what I was feeling when I tried the hard swallowing with the water. When I have the next swallowing evaluation done I am going to try doing a hard swallow to see if the epiglottis moving is what is causing the pain / discomfort. It could be that is the strictures formed during treatment being stretched out. In some ways it reminds be of the jaw stretching exercises I did at the beginning to increase the amount my mouth could open.
This is where hot dog therapy comes in. Hot dogs are essentially pureed meat. (I use the term "meat" lightly. :-)) I have been able to eat hot dogs without buns in small bites but never in a way that resembled normal. One of the problem is that I prefer the white hot ones with natural casings. those casings cause some serious debris problems. So decided to switch to the skinless dogs. The idea is to chew them up a bunch and then take a large sip of water and try to force it down. This gives enough volume to that I can feel it but being pureed meat it lessened the chance of getting stuck. Achieving the effect of feeling the pressure is hit or miss but generally I can do it a few times per hot dog. Of course not being content with just that result I decided to add in another twist of two. The first was using a bun. What I have found is that if I use a New England style hot dog bun lightly toasted on both sides it reduces the problem I normally have with bread in getting stuck and increases the likelihood that I will feel the pressure from swallowing. The second addition was hot dog chili. This delicacy comes in a can and is mostly pureed beans with some onion. Yes... I know canned chili but for a hot dog this is about right and it is the same as you would get from a street vendor. The addition of the chili also helped mitigate the potential for the bread from the bun getting stuck.
The plan is to try to have at least one hot dog a day in this manner for the next month or so. The goal is to see if this is helping to stretch the epiglottis and / or the area above the esophagus. So far after 1 week I seem to be able to eat a hot dog easier than I could before starting this. Many thanks to the 12 brave hot dogs that made the ultimate sacrifice this past week for operation garbage plate. :-)
I know... it may seem like a horrible chore having to eat a chili dog a day. It's a burden that I am willing to take on, anything for science. :-)
Next week I am back in for dilation procedure X.
He got a copy of the speech therapist report on the swallowing evaluation and a new term was introduced. Pharyngeal Dilation. Along with the esophagus there is also an area above it that is constricted. Thus pharyngeal dilation. I haven't done much research on this but it is next up on my question to the ENT doc.
Hot Dog Therapy
When I first started on operation garbage plate I was focused primarily on the esophagus opening. Initially just drinking water in any amount was a challenge if not impossible. One thing I would try to do is drink a bit more than I can handle (water that is not adult beverages!) and see if I could force it down with a hard swallow. I could feel some discomfort / slight pain when I did this but in the end it really didn't help make swallowing any easier. Every now and then I would give it another try without any results.
After the swallowing evaluation I started to wonder what I could do to move the epiglottis. Then it hit me, maybe that was what I was feeling when I tried the hard swallowing with the water. When I have the next swallowing evaluation done I am going to try doing a hard swallow to see if the epiglottis moving is what is causing the pain / discomfort. It could be that is the strictures formed during treatment being stretched out. In some ways it reminds be of the jaw stretching exercises I did at the beginning to increase the amount my mouth could open.
This is where hot dog therapy comes in. Hot dogs are essentially pureed meat. (I use the term "meat" lightly. :-)) I have been able to eat hot dogs without buns in small bites but never in a way that resembled normal. One of the problem is that I prefer the white hot ones with natural casings. those casings cause some serious debris problems. So decided to switch to the skinless dogs. The idea is to chew them up a bunch and then take a large sip of water and try to force it down. This gives enough volume to that I can feel it but being pureed meat it lessened the chance of getting stuck. Achieving the effect of feeling the pressure is hit or miss but generally I can do it a few times per hot dog. Of course not being content with just that result I decided to add in another twist of two. The first was using a bun. What I have found is that if I use a New England style hot dog bun lightly toasted on both sides it reduces the problem I normally have with bread in getting stuck and increases the likelihood that I will feel the pressure from swallowing. The second addition was hot dog chili. This delicacy comes in a can and is mostly pureed beans with some onion. Yes... I know canned chili but for a hot dog this is about right and it is the same as you would get from a street vendor. The addition of the chili also helped mitigate the potential for the bread from the bun getting stuck.
The plan is to try to have at least one hot dog a day in this manner for the next month or so. The goal is to see if this is helping to stretch the epiglottis and / or the area above the esophagus. So far after 1 week I seem to be able to eat a hot dog easier than I could before starting this. Many thanks to the 12 brave hot dogs that made the ultimate sacrifice this past week for operation garbage plate. :-)
I know... it may seem like a horrible chore having to eat a chili dog a day. It's a burden that I am willing to take on, anything for science. :-)
Next week I am back in for dilation procedure X.
Monday, May 11, 2009
Swallowing: A Rube Goldberg Invention
I had a barium swallow test done last week. This is the second one I have had done and going forward the plan is to do them every two months to monitor the progress of the dilation procedures. One thing that this test along with my other research into swallowing has shown is that swallowing is way more complex than I ever realized. Aside from the whole chewing, swallowing, tongue movement and esophagus stuff there is also coordination between the throat muscles and one other minor thing, the epiglottis.
That last thing is one of the sources of my debris problems. BTW that now has a more formal name, nasal regurgitation. Personally I think they could have come up with a much better technical term for it, maybe something in Latin. Nasal regurgitation sounds like the punch line from a stand up comedian. Anyway I guess the way its supposed to work is that when you swallow the epiglottis moves down to cover the trachea and stays horizontal or even pointing a bit downward so whatever you are consuming doesn’t go down the windpipe and moves along on its merry way. What the test revealed is that the epiglottis (try saying that 10 times fast) just isn’t moving, instead it creates a pocket to gather some of the food stuff in there. When I cough it dislodges the particles but sends some up to my nose. My guess is that depending upon what I eat and how, i.e. with or without water or other lubricants (mayo for example) , determines how long things get stuck there and how much of a debris factor there is. This could explain why some things seem to be OK and others require a significant amount of coughing to dislodge.
At this point they really haven’t provided much info on how to change the way the epiglottis is behaving. From what I have been able to research there aren’t any muscle groups involved, it is just supposed to flop over when you swallow. Most likely strictures have formed from the radiation treatment so the question will be what, if any, means there are to deal with the strictures. Later this month I meet with the radiation doc and will see if he has any ideas. After that I will most likely get in touch with the ENT doctor to see what they suggest.
That last thing is one of the sources of my debris problems. BTW that now has a more formal name, nasal regurgitation. Personally I think they could have come up with a much better technical term for it, maybe something in Latin. Nasal regurgitation sounds like the punch line from a stand up comedian. Anyway I guess the way its supposed to work is that when you swallow the epiglottis moves down to cover the trachea and stays horizontal or even pointing a bit downward so whatever you are consuming doesn’t go down the windpipe and moves along on its merry way. What the test revealed is that the epiglottis (try saying that 10 times fast) just isn’t moving, instead it creates a pocket to gather some of the food stuff in there. When I cough it dislodges the particles but sends some up to my nose. My guess is that depending upon what I eat and how, i.e. with or without water or other lubricants (mayo for example) , determines how long things get stuck there and how much of a debris factor there is. This could explain why some things seem to be OK and others require a significant amount of coughing to dislodge.
At this point they really haven’t provided much info on how to change the way the epiglottis is behaving. From what I have been able to research there aren’t any muscle groups involved, it is just supposed to flop over when you swallow. Most likely strictures have formed from the radiation treatment so the question will be what, if any, means there are to deal with the strictures. Later this month I meet with the radiation doc and will see if he has any ideas. After that I will most likely get in touch with the ENT doctor to see what they suggest.
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.
Tuesday, February 24, 2009
From Vegetarian to Atkins
Dilation procedure VIII went as expected it got me back to 15 MM. Right now I am just hovering at that level. The next procedure is in 4-6 weeks and after that I am going to ask to go back on the 2 - 3 week schedule. I seemed to make forward progress when there was less time between procedures.
One interesting thing is that my efforts to try to swallow with less water have really started to have an impact. Aside from the downstream benefits of drinking less water I also am also able to eat more items than I have been in the past. There were items that should have been small enough swallow but presented a problem. I have just started to be able to eat home cooked hamburgers with cheese, bacon and lots of mayo with some problems but I can get it down. Lately I have been having those for lunch and dinner just to get the practice. (O.K... also for the taste. Lets face it everything tastes better with bacon!) I am hopeful that burgers follow the same track that omelettes followed. With omelettes it was a major issue just to be able to eat one in an hour. Then I got it down to half an hour and now I can eat one in about 20 minutes without much to drink. That isn't back to where I was at but it is far better than where I was.
This does get into one of the things I feel is lacking (out of the many things I feel are lacking) in the Cancer industry. There really aren't many "how-to" guides out there, in particular for us head neck and throat cancer folk. Swallowing is an example of this. As I have found out there are a lot of aspects to swallowing. I was focused initially on just dry mouth and the esophagus opening. Just as important is technique. Strengthening the muscles in my throat and even posture I have found are very important. This is where a how-to guide would have really helped. Another guide that could be written is "Projectile Vomiting: Time Tested Techniques For Hitting The Bucket.". That one would have been very useful. My point is that I think most people that get cancer are newbies and learn by trial and error. Simple things like when should you call the doctor to talk about things like pain meds (I was way behind the curve on that one) or nausea would have been nice to have.
One interesting thing is that my efforts to try to swallow with less water have really started to have an impact. Aside from the downstream benefits of drinking less water I also am also able to eat more items than I have been in the past. There were items that should have been small enough swallow but presented a problem. I have just started to be able to eat home cooked hamburgers with cheese, bacon and lots of mayo with some problems but I can get it down. Lately I have been having those for lunch and dinner just to get the practice. (O.K... also for the taste. Lets face it everything tastes better with bacon!) I am hopeful that burgers follow the same track that omelettes followed. With omelettes it was a major issue just to be able to eat one in an hour. Then I got it down to half an hour and now I can eat one in about 20 minutes without much to drink. That isn't back to where I was at but it is far better than where I was.
This does get into one of the things I feel is lacking (out of the many things I feel are lacking) in the Cancer industry. There really aren't many "how-to" guides out there, in particular for us head neck and throat cancer folk. Swallowing is an example of this. As I have found out there are a lot of aspects to swallowing. I was focused initially on just dry mouth and the esophagus opening. Just as important is technique. Strengthening the muscles in my throat and even posture I have found are very important. This is where a how-to guide would have really helped. Another guide that could be written is "Projectile Vomiting: Time Tested Techniques For Hitting The Bucket.". That one would have been very useful. My point is that I think most people that get cancer are newbies and learn by trial and error. Simple things like when should you call the doctor to talk about things like pain meds (I was way behind the curve on that one) or nausea would have been nice to have.
Tuesday, February 10, 2009
What's Happening This Week
I have two appointments this week. The first is with the radiation oncologist for my 9 month checkup with him. The second is dilation procedure VIII. So far that looks to be a go! One thing I plan to ask the radiation oncologist about is my voice. So far my voice has not recovered as much as I would have liked and I need to see what the next steps are. Most of my focus up to this point has been on swallowing but I will need to start to focus on my voice as well.
Thursday, February 5, 2009
Mission Rescheduled Due To Weather
The cold that is, or more appropriately put my cold. Today's dilation procedure was rescheduled to next week because of a cold I can't seem to shake. I called yesterday to let them know and of course the procedure was rescheduled. Something about wanting me to be able to breath properly while they have me under. :-).
Sunday, February 1, 2009
Frozen Food That Isn't Ice Cream
I discovered another food option yesterday. Every now and then I will wander the food aisles of stores to see if I can get any new ideas for things to eat. Yesterday while I was at Target I checked out the frozen food section there. Normally frozen food entrees don't work out all that well. The food tends to get a bit rubbery and that makes it difficult for me to eat. However I did rediscover an old favorite, Stoufer's frozen mac and cheese. I have had mixed success with Stoufer's products and hadn't really given them a second look lately. It turns out the mac and cheese was gooey enough to eat reasonable well. As always the debris factor was there but for the taste and the calories it was worth it. The box I got said it was 2.5 servings. I am not sure how they calculate the numbers but I had the equivalent of 2 servings for dinner and finished up the rest later that night. All in it was around 800 calories. Not too bad at all.
Wednesday, January 28, 2009
Preperation Is Everything
While waiting for the next dilation procedure I have continued with my food experimentation. One thing I have found is that how the food is prepared is as important as what the food is. Meatloaf is a good example. A while back I did try one of the pre packaged frozen meatloaf dinners. Needless to say it was not overly successful. There is something about ground beef that causes it to be a problem in almost any form. Bulk sausage also suffers from the same problems except when it is made into something like sausage gravy. Even then there are problems but not as bad as ground beef. Besides properly made sausage gravy and biscuits tastes good enough to put up with the problems eating it.
After trying packaged frozen meatloaf without success I was ready to write it off. I decided to give meatloaf another try but this time make it myself. I used a mix of ground beef, pork and veal as the base meat and a recipe from AllRecipes.com with some minor substitutions. (Let's be real, who has panko bread crumbs just lying around the pantry?) Turns out the meatloaf was a success, or as much of a success as eating can be for now. This particular recipe used ketchup as one of the liquid ingredients and as the glaze. Next time I think I will substitute some Dinosaur BBQ sauce instead to add a bit more zing. (Yep... once again all that late night TV is paying off by expanding my culinary vocabulary.) The other nice thing about meatloaf is that it keeps reasonable well and reheats easily without that much degradation in quality. This is important because one of the problems I have is that most things I can eat require advance preparation and don't lend themselves to just heating up in the microwave. As much as I like to cook there are times when you just want to heat something up to eat.
Two other home made items that I can eat reasonable well and can be made in advance are potato salad and baked beans. Baked beans work out well because of the nutrition in the beans. I can eat some canned beans but I prefer the home made ones and there are some significant cost savings there. These I just make using the standard Boston Baked beans recipe from "The Joy of Cooking". Potato salad also works out well. Both of these items keep well and can be ready to eat quickly. The only real modification I make to potato salad is to drop celery from the recipe. Celery, a.k.a. The Stalk of Death, is a problem to eat on many levels at this point of time and I avoid it like the plague. When I really want to live life large I will have a Hoffman's Coney (White hot to some folk) without the bun, baked beans and potato salad. The coney is essentially pureed meat and the Hoffman's brand is the one that I can eat without too many problems.
After trying packaged frozen meatloaf without success I was ready to write it off. I decided to give meatloaf another try but this time make it myself. I used a mix of ground beef, pork and veal as the base meat and a recipe from AllRecipes.com with some minor substitutions. (Let's be real, who has panko bread crumbs just lying around the pantry?) Turns out the meatloaf was a success, or as much of a success as eating can be for now. This particular recipe used ketchup as one of the liquid ingredients and as the glaze. Next time I think I will substitute some Dinosaur BBQ sauce instead to add a bit more zing. (Yep... once again all that late night TV is paying off by expanding my culinary vocabulary.) The other nice thing about meatloaf is that it keeps reasonable well and reheats easily without that much degradation in quality. This is important because one of the problems I have is that most things I can eat require advance preparation and don't lend themselves to just heating up in the microwave. As much as I like to cook there are times when you just want to heat something up to eat.
Two other home made items that I can eat reasonable well and can be made in advance are potato salad and baked beans. Baked beans work out well because of the nutrition in the beans. I can eat some canned beans but I prefer the home made ones and there are some significant cost savings there. These I just make using the standard Boston Baked beans recipe from "The Joy of Cooking". Potato salad also works out well. Both of these items keep well and can be ready to eat quickly. The only real modification I make to potato salad is to drop celery from the recipe. Celery, a.k.a. The Stalk of Death, is a problem to eat on many levels at this point of time and I avoid it like the plague. When I really want to live life large I will have a Hoffman's Coney (White hot to some folk) without the bun, baked beans and potato salad. The coney is essentially pureed meat and the Hoffman's brand is the one that I can eat without too many problems.
Thursday, January 15, 2009
Once Again Negative Is Good!
I had my 9 month check up at the medical oncologist office today. The CT Scans I had earlier in the week came back negative and as always negative is good! The next follow up appointment and CT Scans are scheduled for April.
Monday, January 12, 2009
Happy New Year!
It's a new year and now that the holidays are over I start back into Operation Garbage Plate. This week I have some tests scheduled including a CT Scan to see how things are going. I also meet with the medical oncologist for my 9 month checkup. After that its back to the dilation procedures. Due to scheduling conflicts (Who knew that doctors took vacations?) the next procedure isn't until February 5th.
Operation Garbage Plate Update
Currently I am not using the PEG tube for any of my feedings. Big time Yippee! for that. Unfortunately they won't let me get the thing taken out until a few months after I have completed the dilation procedures. This is just in case something goes wrong with a procedure and I have to start using the thing again.
On the food front I have been experimenting with different types of food items and broadening what I can and can not eat. At this point I still need to prepare and eat everything at home. I did try to eat a McDonald's fish fillet on the way home from a hockey game last week and lets just say it wasn't something I would want to do in public. :-) To go to the game I had to be away from the house for 5-6 hours and that is a stretch for me so the option was to try something out or bring a can of Ensure. I decided to live life on the edge and try a Fillet of Fish sandwich with extra tarter sauce. All in I could eat it the sandwich though it did take about 45 minutes and involved lots of coughing along with the usual debris issues.
One thing I did find out is that I am able to eat french fries that are larger cuts like steak fries. I had tried McDonald's french fries in the past thinking that they were small enough to eat. The problem is that they have a higher proportion of cooked exterior surface that doesn't break down as much in your mouth. Big time problem. However I did try a larger french fry once and in small bites that wasn't much of a problem. I can't quite eat them like normal but they still taste good.
Other things that I have added to my diet are Thai curries with coconut milk. Fortunately I really like this food and the biggest challenge I have is finding a protein that I can have with them. So far tofu and imitation crab work well. I also tried braising a duck leg quarter and while it took me awhile to eat it I didn't have the normal coughing fits afterwards. I also add in quartered slices of summer squash, zucchini and mushrooms to get some vegetables. It's pretty good and adds some variety to what I can eat.
Another tactic that I am trying is to eat things with less water. I reviewed my notes from the last meeting at Roswell Park. There are many aspects to swallowing. One aspect is the muscles that are actually doing the work. It appears that there are lots of muscles involved that require strength and coordination in order to swallow properly. One potential side effect is that the nerves will get damaged. I don't think that happened in my case. What has happened is that like the rest of my muscles those involved in swallowing have also weekend from lack of use. By using water to wash down every bite I am in essence "drinking" my food. Some of the reason for using water is to combat dry mouth but I also do it because it makes swallowing easier.
Going forward I am trying to swallow without drinking after every bite. Think of it has doing sit ups for your throat or push ups for your tongue. (Look for the new Boot Camp DVD : Throat of Steel. Coming to a store near you.) At first it was very difficult. After about 3 weeks it is getting easier and I can definitely tell a difference in my ability to swallow. The esophagus opening is still a big deal but even if my esophagus could open up more I would still need to strengthen those muscles and relearn how to swallow.
Operation Garbage Plate Update
Currently I am not using the PEG tube for any of my feedings. Big time Yippee! for that. Unfortunately they won't let me get the thing taken out until a few months after I have completed the dilation procedures. This is just in case something goes wrong with a procedure and I have to start using the thing again.
On the food front I have been experimenting with different types of food items and broadening what I can and can not eat. At this point I still need to prepare and eat everything at home. I did try to eat a McDonald's fish fillet on the way home from a hockey game last week and lets just say it wasn't something I would want to do in public. :-) To go to the game I had to be away from the house for 5-6 hours and that is a stretch for me so the option was to try something out or bring a can of Ensure. I decided to live life on the edge and try a Fillet of Fish sandwich with extra tarter sauce. All in I could eat it the sandwich though it did take about 45 minutes and involved lots of coughing along with the usual debris issues.
One thing I did find out is that I am able to eat french fries that are larger cuts like steak fries. I had tried McDonald's french fries in the past thinking that they were small enough to eat. The problem is that they have a higher proportion of cooked exterior surface that doesn't break down as much in your mouth. Big time problem. However I did try a larger french fry once and in small bites that wasn't much of a problem. I can't quite eat them like normal but they still taste good.
Other things that I have added to my diet are Thai curries with coconut milk. Fortunately I really like this food and the biggest challenge I have is finding a protein that I can have with them. So far tofu and imitation crab work well. I also tried braising a duck leg quarter and while it took me awhile to eat it I didn't have the normal coughing fits afterwards. I also add in quartered slices of summer squash, zucchini and mushrooms to get some vegetables. It's pretty good and adds some variety to what I can eat.
Another tactic that I am trying is to eat things with less water. I reviewed my notes from the last meeting at Roswell Park. There are many aspects to swallowing. One aspect is the muscles that are actually doing the work. It appears that there are lots of muscles involved that require strength and coordination in order to swallow properly. One potential side effect is that the nerves will get damaged. I don't think that happened in my case. What has happened is that like the rest of my muscles those involved in swallowing have also weekend from lack of use. By using water to wash down every bite I am in essence "drinking" my food. Some of the reason for using water is to combat dry mouth but I also do it because it makes swallowing easier.
Going forward I am trying to swallow without drinking after every bite. Think of it has doing sit ups for your throat or push ups for your tongue. (Look for the new Boot Camp DVD : Throat of Steel. Coming to a store near you.) At first it was very difficult. After about 3 weeks it is getting easier and I can definitely tell a difference in my ability to swallow. The esophagus opening is still a big deal but even if my esophagus could open up more I would still need to strengthen those muscles and relearn how to swallow.
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