Its been 5 days since the PICC line was removed and each day things get a bit better. Based on this experience and the last one its the 3-4 days after the 5FU infusion that are the worst. This time was a bit different. On Monday I went in to get a shot to increase my white blood count and have blood tests done. This was day 2 after the PICC line was taken out so I was a bit out of it. The chemo nurses at the doctors office were great and we talked a bit about what was going on. Last time they increase the dose of the anti nausea drug and this time the steroid I take right after chemo was continued for a bit longer. All with positive results.
I explained that the problem on Monday was the 5FU was causing mouth and throat sores and the pain meds barely kept up with it. I also explained that with the mucus issue when I cough it up it would sometimes trigger a gag reflex and stomach acid would come up. Oh... I should have mentioned potential gross part coming up. Oops. :-) Then when the stomach acid hits the sores things really get wild. Of course at this time I wasn't talking again (More on that in a bit) so I had to write it out. That worked out well. In the past I have called in and tried to communicate as best I could with limited conversation or through Sue. Being able to write directly to them in the office worked out for the best. They made two more changes. First they increased one of the pain meds to help with the mouth sores and they put me on a drug that limits stomach acid for acid reflux. Between those two this time around has been better. Even when I have to really work to cough up the mucus (I warned you about the gross stuff) I don't get the stomach acid flowing. That avoids the chain reaction that goes along with it.
Another change I have made is I am currently sleeping reclined in a chair. Not too worry its comfortable and all that. I found that with the mucus level where it is currently at if I am in bed to sleep it tends to pool at the back of the throat even more and I wake up after an hour or two gaging. I still don't sleep more than 1-2 hours at a time but I don't wake up choking either.
One last change I made was the frequency of the feedings. The goal has been 8 cans a day doing two at a time. I still have the goal of 8 cans a day but now I am doing them 1 can at a time. Its more of a hassle with the PEG tube but the benefit is that if I do throw up I am only losing one can of nutrition. Also by feeding more frequently my stomach is empty less. This has an impact on nausea. I am up all hours anyway so doing 8 feedings a day really isn't too big of a hassle and it seems to have also helped with the side effects.
Relating this back to talking last week I was able to actually hold a few minute conversation with one or two people on the telephone. Today I am back to writing notes or if I have to barely uttering one word statements. What happens is I slowly get better after the chemo treatment... right up until the next one starts. Then I go back to the beginning again. I realized this with talking and also used this information to adjust how I dealt with the side effects. For example the farther away I get from the chemo treatments the less mucus I get and I can talk better. When that happens I start to reduce the treatments that I have to slow down the mucus. The reason is that those drugs were starting to cause severe dry mouth while sleeping. (Talk about waking up without a lot of fun. Whew!) What I figured out is that when the next chemo starts I need to go back to the beginning and start taking those drugs again or at least start to introduce them. An example would be the ear patch. About two weeks after the chemo ended I stopped wearing the ear patch. No problem then. However when this round of chemo started and I sensed the mucus building I started using the patch again. Essentially I need to adjust my treatment of the side effects on a regular basis. Until I get by the last chemo treatment my condition will continue to be one where I get a bit better, a bit better and then go back to the end of the line again. Armed with that knowledge I am better able to deal with the side effects when they happen. That has made it easier this time around. Fortunately there is only one more chemo treatment to go. Yippee!!
A Comment On Food..
I don't think I realized how much the swallowing issue was bothering me. I didn't dwell on it but it did bother me occasionally. Now that I think I have a good handle on that I don't think about it much anymore. I actually started to get interested in the cooking shows and such again. Food Channel (AKA the Food Porn Network) has changed a bit and seems to be more into competition or cooking that normally people can't do so that has become less interesting to watch. (Good Eats is still a fun show for the entertainment value) What I have found is that YouTube has lots of "home made" cooking videos that are geared more towards normally people. Yep... that's what I do when I am up late at night and can't sleep... check out cooking videos on YouTube. Sad but true. Seriously though I watched one the other day on making bread. It was about 10 minutes long. It turned out that I saw something similar on the Food Channel awhile ago and I think the YouTube video had more useful how to content than the Food Channel did. If you are interested in cooking there are some good things out there on YouTube. You have to search a bit. There also seem to be quite a few music videos of cooking but there are also some with good explanations.
Thursday, March 13, 2008
Sunday, March 9, 2008
Some Rambling Thoughts On Eating...
Afternoons seem to be a bit better for this round of chemo treatment. All of the usual symptoms are present, tingling in the fingers, mouth sores, irritation of the throat and such. What I have found is that when I am like this it is better not to lie down. That causes mucus to pool at the back of the throat and get thick. Then unfortunately my body only seems to have one way to want to get ride of it, coming back up. Not a lot of fun. What I will end up doing for the next few nights is sleeping, when I can sleep, in a chair. Its not the best solution but it beats the alternative.
One thing I have been able to do is surf the Internet so I thought I would try my hand at researching dry mouth again. After months of on again and off again searching today I found some good information that helped ease my mind a bit. As you may know one of my concerns about the long term effects has been eating. For those that know me you know how much I enjoy food. Who else would spend their lunches up in Syracuse doing field research on the downtown hot dog vendors to see who had the best chili dogs. (BTW I don't know the name off the top of my head but its the guy near what use to be called the MONY Towers. Good service, good price and great dogs!) It was a sacrifice but myself and another person visited just about every hot dog vendor within walking distance to gather the research information. Wouldn't you know it the first place turned out to the be best. One other FYI some vendors try to extend the menu by adding things like salt potatoes and other items. They sound good but from practical experience I can tell you that salt potatoes do not lend them selves well to eat as street food. Food that requires eating utensils really doesn't work out so well as street food. But I digress.
Enter A New Term: Dysphagia
My concern was that once I started treatment the suggestions for food all seemed to be things like mashed potatoes with gravy, ice cream Popsicles and such. The problem I had is that in addition to the dry mouth issues I actually had another side effect. I also was developing a condition called Dysphagia. Essentially a swallowing disorder. This was from the chemo and the radiation treatment. It included the reduced saliva but also the swelling in the throat and the sores. The sores right off the bat eliminated anything sweet like ice cream. One that hit the sores it was painful. The mushed food worked out OK at the beginning but at the throat became more swollen it became harder. Thus the need for the PEG tube. While I was glad I had the PEG tube I was also a bit discouraged that I wasn't able to even eat the basic types of food that were recommended. At the time I lumped all of this into being caused by dry mouth. Now that I have researched it some more it was a combination of dry mouth and the swallowing disorder.
As a result I have had my on again off again paranoid views that I may never again enjoy real food. It is generally accepted that I will have some form of dry mouth as a result of the treatments. The damage from the radiation treatment is permanent. Some will come back over time but there will be some loss of saliva. (Note: semi gross part coming up) Your saliva is made up of two parts. The first part is the liquid part and the second part is the white part of the saliva. There are more technical names than that but you get the idea. The liquid part is the first part to get damaged and that did. Having said that I can generate some saliva and when I do test swallow I can, painfully try to swallow that. No additional permanent damage is being done to my saliva glands now so if anything that situation should improve. I think half the drugs I am on have some sort of dry mouth warning on them. Where I have had problems with dry mouth that becomes painful is when trying to stop the mucus flow. Between the ear path (once again where is the Nobel Prize for the crew that came up with that idea?), Sudafed, these eye drops that you put under your tongue and my every changing condition based on where I am at in the chemo treatments I have had situations where I wake up and my mouth is painfully dry. Fortunately that is a rare occurrence. As I come out of treatments my need for those other medications will go away so I am guessing that while I will have lingering dry mouth it won't be to the point of always in pain. My guess is that I will be more aware of it and most likely always have a water bottle with me. That and my dreams of making the Olympic Spittoon team are probably gone as well.
Getting back on track the big issue I have now is Dysphagia, swallowing. With eating there are three aspects that have been effected by my treatment plan. The first is dry mouth, the second is swallowing and the third is taste. Taste is another area that changes. What I have been told is that it can be permanent and to start out with strong tasting foods. Even though I can't swallow I have done some limited field tests on my taste buds and they are not dead. (Yeah!!!) I placed some things like a cheese puff on my tongue and have been able to taste it. I tried a sip of grape juice during one of my braver swallowing experiments and I could taste that as well. Also once again for those of you that know me subtle flavors have never been my preference. So having to eat "strong" flavored foods are fine with me. That means one of the three components of eating should be all set. Oh, I also haven't mentioned smell but that wasn't effected at all. BTW you may smell lots more flavors that you taste but just smelling food doesn't really make up for not being able to eat it. :-)
Two components are left, dry mouth and swallowing. For the past few months I have combined the two into one problem (big mistake) and tried to envision how things would be once I am done with treatments. My paranoia on this also gets compounded whenever I go to see the doctor and they ask about eating and seem surprised that I am still getting everything through the PEG tube. I put that one down to the lack of hands on experience with my particular type of treatment plan. More on that later. Every once in awhile I would get the feeling that I was behind on where I should be, part of that is my fault for not just accepting that I wouldn't be eating regular food for 6-8 months or more, and the problems I had eating simple foods the beginning.
So today while doing some research again I came across a site put together by a parent of a child with cancer. The site is This is a interesting site and had a link to a food product company called Hormell Health Labs and that led me to the term Dysphagia. Suddenly things started to become much more clear to me. I had two problems. The first was dry mouth the second was Dysphagia. I was going to have some type of permanent dry mouth condition but the swallowing disorder should eventually go away. Now this became interesting. The company makes several products some that are considered puried products. I had been told that eating pureed products was a good way to go but in my limited knowledge of what is considered a pureed product I limited my vision to only those things that are in liquid form. Turns out for swallowing disorders that really isn't a accurate definition. This company makes pureed products that are shaped into patties solid items. The difference is that they are designed with some guidelines in how the break up when you eat them and swallow them. While I haven't checked out all the details on this I think meatloaf and gravy could be considered a pureed food item. On a side note again there was a project we worked on years ago where I spent many lunches at a pizza place / dinner that had excellent meatloaf and gravy. Real food that I could eat.
Now I was getting encouraged. Even if I did end up with a permanent swallowing disorder I would still be able to eat and taste some real food. It would just be in less textured form but it could be solid. Once again things like pancakes, fish patties seem to be OK. This caused me to think a bit about what my condition is like now and what my expectations probably should be.
With many cancer patients maintaining weight is a problem. In my case I have lost about 40 pounds. Proper nutrition is a key to battling cancer. In my case I get all the nutrition I need from the feedings on the PEG tube put not enough calories. That is changing with the latest feeding order. They are upping the calorie count. For many cancer patients the issue is lack of appetite, fatigue and nausea. I of course have those but in addition the added issue that the cancer was in my head and throat. This means that in addition to the normal things that keep cancer patients from wanting to eat I had a few additional issues, dry mouth and swallowing disorders. To make matters worse the dry mouth and swallowing disorders were getting progressively worse as the treatments went on. That I understood and had no illusions that I would be eating normally during that phase of the treatment plan... it was phase II that I was misguide on. I don't know much about the treatment plans of other head neck and throat cancer patients but it appears that for some of them once they are done with the radiation and chemo they are just about finished. In my case they have me on the second phase of the treatment that involves the same primary drug, Cisplatin, and the addition of a second drug, F5U. There in lies the culprit and cause of some of my misplaced anxiety on eating.
F5U One Nasty Drug
We had been told two things about the second phase of the treatment plan. First was that the doses of the Cisplatin were lower and second that the side effects were less. The side effects are less that the combined radiation and chemo treatment but they are still there and can be pretty nasty. One of the side effects of 5FU is that it irritates the mouth and throat including causing mouth sores and in my case aggravating the throat quite a bit. What this means is that my Dysphagia essentially gets worse with each treatment. There is a bit of a delayed effect in the 5FU what happens is 2-3 weeks after the treatment starts the impact is pretty strong. For example right now I am on day 7 of the treatment and my throat is raw even with the pain killers. I have to watch them to make sure I don't miss a dose by even a few minutes. Even then it barely keeps even. Just a week or so ago the Fentanyl patch I wear was able to handle most of the pain. As I get farther from the start of the treatment things slowly get better. Then BAM! Time for another treatment and we are back to the beginning. Essentially it is a losing battle at this time to try to fight against the swallowing disorder. No matter what I do each chemo treatment is going to impede any attempt to try real food. Having that knowledge is actually a relief to me. At this point I have no expectations of any real progress until 4 weeks or so after the end of the chemo treatments. That puts my mind at ease. I am sure that to the medical providers who have dealt with all types of cancer conditions, some far worse than mine, my expectations on eating seem a bit odd. Its just that when people seem surprised that I am still using the PEG tube and every one keeps mentioning mashed potatoes and gravy and ice cream as primary food sources I tend to get a bit paranoid.
My Revised Expectations
Based on these new revelations I have started to revise some of my expectations. First is that there isn't much sense to dwell on the swallowing until the treatments are completed. Much like the radiation was a cumulative impact as long as I still have a chemo treatment to go this situation isn't going to get any better. I just need to accept it and move on. The other expectation is that I should be able to eat most of the things I like and the problem is going to be dry foods. I may not have the desire to sit down and and eat a bag of pretzels but no great loss there. Most of my favorite foods are well lubricated (gotta like those sauces) and from what I have read seem to fit in with where I will be at. The biggest limiting factor now is the swallowing disorder and nothing is going to really change there until after the chemo treatments are completed.
This is one of the downsides to having a Nasopharyngeal Carcinoma and being treated in an area where they may get one case a year. The uniqueness of the cancer doesn't provide a lot of first hand experience for the medical professionals in anticipating the side effects and expectations. The treatment plan is the correct one and being delivered properly but there are two parts to cancer treatment. The first, and most important, is the success of the treatment plan but in addition quality of life during and after treatment are also always weighing on your mind. When you are laid up for 6 months or so you have a lot of time to think about these things. If at the beginning someone had said to me that even after the radiation treatment I would still have the swallowing disorders while in the second phase of the chemo my expectations would have been a bit more realistic. Looking at it now and having gone through two of the follow up chemo treatments I can say for certain there is no way I would be eating normal food with the impact that the 5FU is having on me. Instead, partly of my own fault for wishing it were true, I thought the swallowing problems would slowly recover after the radiation treatments. I hadn't considered that the second phase of treatment would have additional impact on swallowing and it wasn't realistic to expect to be able to eat anything until after the treatment is completed. Also researching the swallowing disorders and visiting a few food providers web pages I can also see that even if I did have some type of limited swallowing disorder I could still eat real tasting food and most of the foods I like would still be OK.
Armed with this knowledge I am more comfortable about the long term prognosis on eating. Yes... I know it seems like a lot of time spent dwelling on something like this but when you are up late an night and can't sleep, haven't had real food in over 5 months and every other commercial on TV seems to be about food you get a bit paranoid. :-) My view is now that until sometime in May myself and the PEG tube will be well acquainted. After that things will slowly get better. In the beginning I may be eating lots of mushy food. But in the end I should be able to enjoy most of the foods that I do like now its just going to take time. That's a relief. I got a Dim Sum cookbook for Christmas and I would hate to think I wasn't going to be able to use it. I also got a great deep fryer for Christmas (yes, these are things I wanted.) and have all sorts of plans for that. I have a feeling that things like chicken wings, french fries with lots of ketchup and donuts are going to be OK. :-)
So that's the end of the rambling for now. I am still going to miss having corned beef and cabbage on St. Patricks day but I am sure it will taste just as good in the summer. :-)
One thing I have been able to do is surf the Internet so I thought I would try my hand at researching dry mouth again. After months of on again and off again searching today I found some good information that helped ease my mind a bit. As you may know one of my concerns about the long term effects has been eating. For those that know me you know how much I enjoy food. Who else would spend their lunches up in Syracuse doing field research on the downtown hot dog vendors to see who had the best chili dogs. (BTW I don't know the name off the top of my head but its the guy near what use to be called the MONY Towers. Good service, good price and great dogs!) It was a sacrifice but myself and another person visited just about every hot dog vendor within walking distance to gather the research information. Wouldn't you know it the first place turned out to the be best. One other FYI some vendors try to extend the menu by adding things like salt potatoes and other items. They sound good but from practical experience I can tell you that salt potatoes do not lend them selves well to eat as street food. Food that requires eating utensils really doesn't work out so well as street food. But I digress.
Enter A New Term: Dysphagia
My concern was that once I started treatment the suggestions for food all seemed to be things like mashed potatoes with gravy, ice cream Popsicles and such. The problem I had is that in addition to the dry mouth issues I actually had another side effect. I also was developing a condition called Dysphagia. Essentially a swallowing disorder. This was from the chemo and the radiation treatment. It included the reduced saliva but also the swelling in the throat and the sores. The sores right off the bat eliminated anything sweet like ice cream. One that hit the sores it was painful. The mushed food worked out OK at the beginning but at the throat became more swollen it became harder. Thus the need for the PEG tube. While I was glad I had the PEG tube I was also a bit discouraged that I wasn't able to even eat the basic types of food that were recommended. At the time I lumped all of this into being caused by dry mouth. Now that I have researched it some more it was a combination of dry mouth and the swallowing disorder.
As a result I have had my on again off again paranoid views that I may never again enjoy real food. It is generally accepted that I will have some form of dry mouth as a result of the treatments. The damage from the radiation treatment is permanent. Some will come back over time but there will be some loss of saliva. (Note: semi gross part coming up) Your saliva is made up of two parts. The first part is the liquid part and the second part is the white part of the saliva. There are more technical names than that but you get the idea. The liquid part is the first part to get damaged and that did. Having said that I can generate some saliva and when I do test swallow I can, painfully try to swallow that. No additional permanent damage is being done to my saliva glands now so if anything that situation should improve. I think half the drugs I am on have some sort of dry mouth warning on them. Where I have had problems with dry mouth that becomes painful is when trying to stop the mucus flow. Between the ear path (once again where is the Nobel Prize for the crew that came up with that idea?), Sudafed, these eye drops that you put under your tongue and my every changing condition based on where I am at in the chemo treatments I have had situations where I wake up and my mouth is painfully dry. Fortunately that is a rare occurrence. As I come out of treatments my need for those other medications will go away so I am guessing that while I will have lingering dry mouth it won't be to the point of always in pain. My guess is that I will be more aware of it and most likely always have a water bottle with me. That and my dreams of making the Olympic Spittoon team are probably gone as well.
Getting back on track the big issue I have now is Dysphagia, swallowing. With eating there are three aspects that have been effected by my treatment plan. The first is dry mouth, the second is swallowing and the third is taste. Taste is another area that changes. What I have been told is that it can be permanent and to start out with strong tasting foods. Even though I can't swallow I have done some limited field tests on my taste buds and they are not dead. (Yeah!!!) I placed some things like a cheese puff on my tongue and have been able to taste it. I tried a sip of grape juice during one of my braver swallowing experiments and I could taste that as well. Also once again for those of you that know me subtle flavors have never been my preference. So having to eat "strong" flavored foods are fine with me. That means one of the three components of eating should be all set. Oh, I also haven't mentioned smell but that wasn't effected at all. BTW you may smell lots more flavors that you taste but just smelling food doesn't really make up for not being able to eat it. :-)
Two components are left, dry mouth and swallowing. For the past few months I have combined the two into one problem (big mistake) and tried to envision how things would be once I am done with treatments. My paranoia on this also gets compounded whenever I go to see the doctor and they ask about eating and seem surprised that I am still getting everything through the PEG tube. I put that one down to the lack of hands on experience with my particular type of treatment plan. More on that later. Every once in awhile I would get the feeling that I was behind on where I should be, part of that is my fault for not just accepting that I wouldn't be eating regular food for 6-8 months or more, and the problems I had eating simple foods the beginning.
So today while doing some research again I came across a site put together by a parent of a child with cancer. The site is This is a interesting site and had a link to a food product company called Hormell Health Labs and that led me to the term Dysphagia. Suddenly things started to become much more clear to me. I had two problems. The first was dry mouth the second was Dysphagia. I was going to have some type of permanent dry mouth condition but the swallowing disorder should eventually go away. Now this became interesting. The company makes several products some that are considered puried products. I had been told that eating pureed products was a good way to go but in my limited knowledge of what is considered a pureed product I limited my vision to only those things that are in liquid form. Turns out for swallowing disorders that really isn't a accurate definition. This company makes pureed products that are shaped into patties solid items. The difference is that they are designed with some guidelines in how the break up when you eat them and swallow them. While I haven't checked out all the details on this I think meatloaf and gravy could be considered a pureed food item. On a side note again there was a project we worked on years ago where I spent many lunches at a pizza place / dinner that had excellent meatloaf and gravy. Real food that I could eat.
Now I was getting encouraged. Even if I did end up with a permanent swallowing disorder I would still be able to eat and taste some real food. It would just be in less textured form but it could be solid. Once again things like pancakes, fish patties seem to be OK. This caused me to think a bit about what my condition is like now and what my expectations probably should be.
With many cancer patients maintaining weight is a problem. In my case I have lost about 40 pounds. Proper nutrition is a key to battling cancer. In my case I get all the nutrition I need from the feedings on the PEG tube put not enough calories. That is changing with the latest feeding order. They are upping the calorie count. For many cancer patients the issue is lack of appetite, fatigue and nausea. I of course have those but in addition the added issue that the cancer was in my head and throat. This means that in addition to the normal things that keep cancer patients from wanting to eat I had a few additional issues, dry mouth and swallowing disorders. To make matters worse the dry mouth and swallowing disorders were getting progressively worse as the treatments went on. That I understood and had no illusions that I would be eating normally during that phase of the treatment plan... it was phase II that I was misguide on. I don't know much about the treatment plans of other head neck and throat cancer patients but it appears that for some of them once they are done with the radiation and chemo they are just about finished. In my case they have me on the second phase of the treatment that involves the same primary drug, Cisplatin, and the addition of a second drug, F5U. There in lies the culprit and cause of some of my misplaced anxiety on eating.
F5U One Nasty Drug
We had been told two things about the second phase of the treatment plan. First was that the doses of the Cisplatin were lower and second that the side effects were less. The side effects are less that the combined radiation and chemo treatment but they are still there and can be pretty nasty. One of the side effects of 5FU is that it irritates the mouth and throat including causing mouth sores and in my case aggravating the throat quite a bit. What this means is that my Dysphagia essentially gets worse with each treatment. There is a bit of a delayed effect in the 5FU what happens is 2-3 weeks after the treatment starts the impact is pretty strong. For example right now I am on day 7 of the treatment and my throat is raw even with the pain killers. I have to watch them to make sure I don't miss a dose by even a few minutes. Even then it barely keeps even. Just a week or so ago the Fentanyl patch I wear was able to handle most of the pain. As I get farther from the start of the treatment things slowly get better. Then BAM! Time for another treatment and we are back to the beginning. Essentially it is a losing battle at this time to try to fight against the swallowing disorder. No matter what I do each chemo treatment is going to impede any attempt to try real food. Having that knowledge is actually a relief to me. At this point I have no expectations of any real progress until 4 weeks or so after the end of the chemo treatments. That puts my mind at ease. I am sure that to the medical providers who have dealt with all types of cancer conditions, some far worse than mine, my expectations on eating seem a bit odd. Its just that when people seem surprised that I am still using the PEG tube and every one keeps mentioning mashed potatoes and gravy and ice cream as primary food sources I tend to get a bit paranoid.
My Revised Expectations
Based on these new revelations I have started to revise some of my expectations. First is that there isn't much sense to dwell on the swallowing until the treatments are completed. Much like the radiation was a cumulative impact as long as I still have a chemo treatment to go this situation isn't going to get any better. I just need to accept it and move on. The other expectation is that I should be able to eat most of the things I like and the problem is going to be dry foods. I may not have the desire to sit down and and eat a bag of pretzels but no great loss there. Most of my favorite foods are well lubricated (gotta like those sauces) and from what I have read seem to fit in with where I will be at. The biggest limiting factor now is the swallowing disorder and nothing is going to really change there until after the chemo treatments are completed.
This is one of the downsides to having a Nasopharyngeal Carcinoma and being treated in an area where they may get one case a year. The uniqueness of the cancer doesn't provide a lot of first hand experience for the medical professionals in anticipating the side effects and expectations. The treatment plan is the correct one and being delivered properly but there are two parts to cancer treatment. The first, and most important, is the success of the treatment plan but in addition quality of life during and after treatment are also always weighing on your mind. When you are laid up for 6 months or so you have a lot of time to think about these things. If at the beginning someone had said to me that even after the radiation treatment I would still have the swallowing disorders while in the second phase of the chemo my expectations would have been a bit more realistic. Looking at it now and having gone through two of the follow up chemo treatments I can say for certain there is no way I would be eating normal food with the impact that the 5FU is having on me. Instead, partly of my own fault for wishing it were true, I thought the swallowing problems would slowly recover after the radiation treatments. I hadn't considered that the second phase of treatment would have additional impact on swallowing and it wasn't realistic to expect to be able to eat anything until after the treatment is completed. Also researching the swallowing disorders and visiting a few food providers web pages I can also see that even if I did have some type of limited swallowing disorder I could still eat real tasting food and most of the foods I like would still be OK.
Armed with this knowledge I am more comfortable about the long term prognosis on eating. Yes... I know it seems like a lot of time spent dwelling on something like this but when you are up late an night and can't sleep, haven't had real food in over 5 months and every other commercial on TV seems to be about food you get a bit paranoid. :-) My view is now that until sometime in May myself and the PEG tube will be well acquainted. After that things will slowly get better. In the beginning I may be eating lots of mushy food. But in the end I should be able to enjoy most of the foods that I do like now its just going to take time. That's a relief. I got a Dim Sum cookbook for Christmas and I would hate to think I wasn't going to be able to use it. I also got a great deep fryer for Christmas (yes, these are things I wanted.) and have all sorts of plans for that. I have a feeling that things like chicken wings, french fries with lots of ketchup and donuts are going to be OK. :-)
So that's the end of the rambling for now. I am still going to miss having corned beef and cabbage on St. Patricks day but I am sure it will taste just as good in the summer. :-)
Chemo Day 6: As Fun As Before
This time around is as much fun as before. The one difference is that this time I know what to expect. The mouth sores have returned along with the mucus problem. On the plus side the at home chemo provider came out to the house to remove the PICC line on Saturday. That was a big benefit of the new company. It was quick and easy. We spent more time going over questions and getting vital signs than removing the line
That's all for now. I am once again bloging from the iPod Touch.
That's all for now. I am once again bloging from the iPod Touch.
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