As part of my taking charge of my recovery I decided to start with some basic clear broth soup to see how that would work. In the last week I determined I can swallow about 2 teaspoons at a time. I figured that out because that is the amount I need to take of the Miracle Mouthwash for the Thrush infection.
I had been trying to sip some flavored water but the combination of sucking on the straw and swallowing seemed to be a bit difficult. So I thought what if I used a spoon. And of course what do you eat with a spoon, soup. That led me to today. I ordered up a clear broth soup with mushrooms from a local sushi place that I like and decided to try to see if I could eat a spoonful or two. In the end I put 4 ounces in a separate bowl and eating it one teaspoon full at a time I was able to consume all 4 ounces. Yippee! 4 ounces isn't a lot but it is a start. Also I am taking this slowly. My stomach has known nothing but the feeding formula for the last 6 months or so and even if everything else was working properly, and it is not, my stomach would still need to adjust. However having said that I didn't have much of a problem consuming the soup a spoon full at a time. The plan for the short term is going to be to try to eat 4 ounces of clear or broth based soup a day for the next few days and see how that goes.
As I try new soups out I will add them to the recovery food list. Any items highlighted in yellow are items that I have tried. Hopefully the list will start to grow over the next few weeks.
Friday, May 23, 2008
Thursday, May 22, 2008
Update on what is coming up next...
The CT Scan went well today. In the past when I had these at the hospital they were done by the people in the radiation department so I stopped in there first. It was great to talk to the people there again. I hadn't seen them in awhile after seeing them for 7 weeks straight. So we chatted for a bit and I mentioned that we should be the CT scan started. That's when I found out that because it was a diagnostic scan and not one for treatment I was supposed to be over in the main hospital. Oops. Oh well, fortunately that was only a two minute walk away and the nurse escorted me over.
One result of talking to the radiation folk is that I asked when they called to confirm the CT scan about physical therapy. They setup of an appointment to be evaluated in June by the speech therapist. Unfortunately its not until June 10th though they are going to see if they can get it moved up a bit. I am looking forward to getting the opinion from the physical therapist. My view is that there are three types of things I can do to affect my swallowing. I could do things that help the situation, have not impact or make it worse. Obviously I don't want to do the latter so working with the speech therapist should help let me know what I should or should not be doing. Also I should be able to get some reasonable expectations. At this point I am just looking to be able to consume liquids. I could get by quite well on soups and smoothies/ milk shakes. No problem there. I am also convinced that there are probably things I could be doing to help the situation along. Its been over 5 months since I last really used my throat for eating and that length of inactivity is bound to require some work to help restore swallowing. Just waiting and seeing doesn't seem like an option to me at this point.
So next week on Wednesday I get the results of the CT Scan. I am a bit apprehensive as I am before all of these tests. I have no reason to think that anything will show up on there but it still causes some apprehension. The week after that I go into to meet with the medical oncologist for a regular checkup. Then the week after that is the eval for physical therapy. (Hopefully that can be moved up a bit.)
On the swallowing front I did make some progress in the last week before the 24 hour hurricanes hit. I seem to be able to swallow, with difficulty, 2 teaspoons at a time. That is good because that is what the miracle mouthwash amount is. I stopped taking that during the whole 24 hour episode and the few days recovering from that. Now I need to start that up again. I also tried out some sugar free candy. That was interesting because it did demonstrate that I could take something that was a solid and chew it up enough in a small enough quantity and swallow it with water. It was a sugar free Stoffers coconut candy covered with chocolate. I literally nibbled at it. I also tried a small, and I mean small, strip of ham and was able to get that down in nibble size bites with water. The plus side of all this is that I could taste the ham fine and the candy fine. It wasn't satisfying at all because I had to work at chewing the food up and drink water to barely choke it down but still it was progress. That along with the vanilla ice cream I tried last week leads me to believe that my taste buds seem to have come through OK. That is good news. I have notice that my jaw range of motion is reduced. This is a potential side effect though I have read that though physical therapy the range can be improved somewhat. That will make chewing a bit easier.
That just leaves the swallowing problem as the main limitation. Hopefully there will be some physical therapy options that will help improve the situation at least to the point where liquids will go down fine.
One result of talking to the radiation folk is that I asked when they called to confirm the CT scan about physical therapy. They setup of an appointment to be evaluated in June by the speech therapist. Unfortunately its not until June 10th though they are going to see if they can get it moved up a bit. I am looking forward to getting the opinion from the physical therapist. My view is that there are three types of things I can do to affect my swallowing. I could do things that help the situation, have not impact or make it worse. Obviously I don't want to do the latter so working with the speech therapist should help let me know what I should or should not be doing. Also I should be able to get some reasonable expectations. At this point I am just looking to be able to consume liquids. I could get by quite well on soups and smoothies/ milk shakes. No problem there. I am also convinced that there are probably things I could be doing to help the situation along. Its been over 5 months since I last really used my throat for eating and that length of inactivity is bound to require some work to help restore swallowing. Just waiting and seeing doesn't seem like an option to me at this point.
So next week on Wednesday I get the results of the CT Scan. I am a bit apprehensive as I am before all of these tests. I have no reason to think that anything will show up on there but it still causes some apprehension. The week after that I go into to meet with the medical oncologist for a regular checkup. Then the week after that is the eval for physical therapy. (Hopefully that can be moved up a bit.)
On the swallowing front I did make some progress in the last week before the 24 hour hurricanes hit. I seem to be able to swallow, with difficulty, 2 teaspoons at a time. That is good because that is what the miracle mouthwash amount is. I stopped taking that during the whole 24 hour episode and the few days recovering from that. Now I need to start that up again. I also tried out some sugar free candy. That was interesting because it did demonstrate that I could take something that was a solid and chew it up enough in a small enough quantity and swallow it with water. It was a sugar free Stoffers coconut candy covered with chocolate. I literally nibbled at it. I also tried a small, and I mean small, strip of ham and was able to get that down in nibble size bites with water. The plus side of all this is that I could taste the ham fine and the candy fine. It wasn't satisfying at all because I had to work at chewing the food up and drink water to barely choke it down but still it was progress. That along with the vanilla ice cream I tried last week leads me to believe that my taste buds seem to have come through OK. That is good news. I have notice that my jaw range of motion is reduced. This is a potential side effect though I have read that though physical therapy the range can be improved somewhat. That will make chewing a bit easier.
That just leaves the swallowing problem as the main limitation. Hopefully there will be some physical therapy options that will help improve the situation at least to the point where liquids will go down fine.
Sunday, May 18, 2008
Weekend Update - A 2 Hurricane Affair
Something new developed this weekend. Apparently I picked up a 24 hour stomach bug that decided to test my ability to vomit on the hour every hour. :-) Starting Friday night until Saturday was an interesting experience to say the least. Fortunately my oncologist was the on call doctor for the weekend. At first I thought maybe it was something to do with my swallowing attempts that was causing the problem. So I kept trying to keep the feedings going, big mistake there! I talked to the doctor on Saturday and he had me stop the feedings for several hours and then only start back with a limited amount. Sure enough by Saturday night the stomach pains had subsided and on Sunday morning I was able to keep the feedings down.
While not a fun time at all I was glad to know that my swallowing exercises did not cause the problem. Today I am still recovering from the 24 hours of fun but I have introduced something else into the swallowing exercises. I took a little bit of some strawberry kiwi sports drink that we had and used that to help with the swallowing. I only take in 1-2 teaspoons at a time but having a bit of flavor does help make the effort worth while. I am also going to start to try to use ice chips as well. Just to keep something cold and wet in my mouth to help with the swallowing.
I also tried out one of the sugar free candies today. This did point out that I most likely will end up with some permanent dry mouth as a result of the treatments. I was able to suck on the candy as recommended but it didn't help out much with saliva production. I had to add in some water now and then to make it work.
While not a fun time at all I was glad to know that my swallowing exercises did not cause the problem. Today I am still recovering from the 24 hours of fun but I have introduced something else into the swallowing exercises. I took a little bit of some strawberry kiwi sports drink that we had and used that to help with the swallowing. I only take in 1-2 teaspoons at a time but having a bit of flavor does help make the effort worth while. I am also going to start to try to use ice chips as well. Just to keep something cold and wet in my mouth to help with the swallowing.
I also tried out one of the sugar free candies today. This did point out that I most likely will end up with some permanent dry mouth as a result of the treatments. I was able to suck on the candy as recommended but it didn't help out much with saliva production. I had to add in some water now and then to make it work.
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