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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