Wednesday, August 20, 2008
I am in good company
I was recent sent a link to this article. It appears that Babe Ruth and I have something in common, the same type of cancer. Now if only we shared hand eye coordination. :-) The article is a good read and definitely shows how things we think are true in fact may not be.
Tuesday, August 19, 2008
Waking Up Miss Silvia
Another major milestone was reached today. I fired up my trusty espresso machine. For the past week or so I have tested the waters with some cappuccino's from my favorite coffee shop. Those have gone down without a problem so I purchased some fresh roasted espresso beans from the same coffee shop and today I brought Miss Silvia out of retirement.
For those of you that don't know I am a bit of a coffee addict. In particular espresso. I have a Rancillo Silvia, aka Miss Silvia, home espresso machine that can make with the proper grinder and fresh roasted beans shots of espresso just like you get at a coffee shop and in some cases (say... Starbucks) much better. (Yep... you can just feel the espresso snobbery. :-))
The picture above isn't my specific machine but the grinder shown and bean storage container are the same as I have and this is pretty much what my set up is like. Now I can combat fatigue the traditional way, with caffeine.
Another Milestone
I did also reach another milestone today. Today I started the drug to help with saliva production. Its a pill I have to take 3 times a day. The pills are pretty small, 0.3 inches in diameter, so I thought I would give swallowing them a try. The test was wildly successful and swallowing these pills with water was not a problem. This is great news because crushing up pills and putting them through the PEG tube gets real old fast. One of my hesitations on going on this medicine was having to take 3 additional pills through the PEG tube. Being able to just pop one in my mouth and take it with a glass of water is a huge step forward.
Sunday, August 17, 2008
A Few Steps Forward and One Step Back
So far the results from the last dilation procedure have been good but not what I expected. As I mentioned the procedure went well and was better than last time. Drinking liquids is definitely easier. What it has done is highlighted other problems that are related to dry mouth.
The New Battle Begins
Up until now I had set aside the dry mouth problem. This was for a few reasons. First I didn't want to add in another set of drugs into the mix at the time I was still recovering from the cancer treatments. The second reason is that I am still only 4 and a half months away from the end of the last chemo treatment. I have been told that it is during the first 6 months most of the recovery occurs and after about a year I should have a good idea of where I will end up at. Finally I am on some drugs that cause dry mouth. So my view was that taking on dry mouth at this point may cause some additional problems and at the same time it would be chasing a moving target.
My first priority was the swallowing problem. (After all, there is only so much time left in the BBQ season!). That was a problem that wasn't due to the drugs I was on and seemed to show no improvement at all so that was the one I decided to go after first. Now with my esophagus opened up to 10 MM some other problems have become apparent and it appears that while pursuing the swallowing problem I will simultaneously pursue some other issues as well.
This approach actually appeals to me. One thing I don't like doing is just sitting around waiting and hoping things get better. I would rather have a plan and things to do.
Operation Garbage Plate
Next up is operation Garbage Plate. One of my food goals is to be able to eat a garbage plate. Other than the crusty bread served with a garbage plate everything else on it looks like something I should be able to eat. Two cheeseburgers (no buns), macaroni salad, home fries (real ones made on a grill not fried) covered with a chili type sauce and onions. I may have missed something but all of that is solid and can be cut into small pieces if required.
There are 3 fronts in Operation Garbage Plate. The first front I haven't really talked about in the past is how much my mouth can open. Right now it is very limited and I couldn't get a hot dog in there if I tried at this point. Well, maybe without the bun but that is it. There is a device that has been recommended to me called Therabyte that helps stretch your mouth a bit at a time. Basically you use it 7 times a day and after several weeks you start to stretch the muscles of your mouth to increase the opening. It can be a bit painful and requires doing multiple times a day but at least there aren't any drugs involved. This isn't required to eat food but will make it easier once I get to that point.
The second front is the one that I have been focusing on and that is my esophagus opening. So far that has been going well and most likely will take another 3-4 procedures to complete. My final goal is to get to somewhere over 15 MM and keep it there. Fortunately the doctor that is doing the procedures is taking a cautious approach to avoid any damage and has done quite a bit of research on the procedure. One of the nurses at the last procedure told me that they ordered in dilators just for this. Way to go GI doc!
The third front is dry mouth. I was aware this was going to be a problem but I wasn't aware of how much of a problem it would be. This is going to be the hardest one to solve. There are basically 2 parts of this problem that need to be addressed. First is the production of saliva. The second is the results of dry mouth on my mouth and the swallowing process. This is what I didn't realize, that dry mouth affects swallowing more than just a lack of liquid to chew food with. Dry mouth injures the oral cavity and that causes problems with swallowing. In my case the back of the tongue is sore when I try to swallow as a result of dry mouth and based on my meeting with the radiation doctor on Friday there is a large section of the back of my tongue that is coated with a thick cover of mucus. This appears to be where the current swallowing problem is coming from. Food particles are getting stuck at the back of the throat on what I have found out it the tongue. (BTW one thing I have found is that the tongue is a lot bigger than you realize. Its definitely several times larger than the part you use to eat an ice cream cone with or stick out at someone. :-)). This area is also near the part of the throat that covers your airway when swallowing. As you can imagine getting something stuck there has some interesting consequences. :-)
So the plan here is two fold. First tackle the cause of dry mouth and that is saliva production and second tackle the side effects in damage to the oral cavity from dry mouth. I had started somewhat on tackling the impact on my mouth. There are a series of products from a company called Biotene that are used to help treat dry mouth. These are essentially a special tooth paste, mouthwash and spray to help when your mouth is dry. I can say that they do have some positive impact. In addition the radiation doctor added a new drug into the mix that increases the production of saliva from the glands that are still intact. He also gave me a sample of a prescription mouthwash to use. This is supposed to help treat the effects of dry mouth. Last he took me off of the sea sickness patch. This patch was used to help control the mucus flow but it also increases dry mouth. He felt my body may have become dependant upon it to regulate the mucus flow. The downside is that the mucus flow is back but he feels that after a week or two it should subside. Fortunately at this time I am not dealing with all of the other issues that I was back when I was undergoing radiation and chemo therapy.
Hopefully the multi front approach of operation Garbage Plate will meet with success. The hardest part of all of this will be dealing with the mucus build up on my tongue that is causing food to get hung up on it. I had better get to work, there are Garbage Plates waiting to be eaten!
The New Battle Begins
Up until now I had set aside the dry mouth problem. This was for a few reasons. First I didn't want to add in another set of drugs into the mix at the time I was still recovering from the cancer treatments. The second reason is that I am still only 4 and a half months away from the end of the last chemo treatment. I have been told that it is during the first 6 months most of the recovery occurs and after about a year I should have a good idea of where I will end up at. Finally I am on some drugs that cause dry mouth. So my view was that taking on dry mouth at this point may cause some additional problems and at the same time it would be chasing a moving target.
My first priority was the swallowing problem. (After all, there is only so much time left in the BBQ season!). That was a problem that wasn't due to the drugs I was on and seemed to show no improvement at all so that was the one I decided to go after first. Now with my esophagus opened up to 10 MM some other problems have become apparent and it appears that while pursuing the swallowing problem I will simultaneously pursue some other issues as well.
This approach actually appeals to me. One thing I don't like doing is just sitting around waiting and hoping things get better. I would rather have a plan and things to do.
Operation Garbage Plate
Next up is operation Garbage Plate. One of my food goals is to be able to eat a garbage plate. Other than the crusty bread served with a garbage plate everything else on it looks like something I should be able to eat. Two cheeseburgers (no buns), macaroni salad, home fries (real ones made on a grill not fried) covered with a chili type sauce and onions. I may have missed something but all of that is solid and can be cut into small pieces if required.
There are 3 fronts in Operation Garbage Plate. The first front I haven't really talked about in the past is how much my mouth can open. Right now it is very limited and I couldn't get a hot dog in there if I tried at this point. Well, maybe without the bun but that is it. There is a device that has been recommended to me called Therabyte that helps stretch your mouth a bit at a time. Basically you use it 7 times a day and after several weeks you start to stretch the muscles of your mouth to increase the opening. It can be a bit painful and requires doing multiple times a day but at least there aren't any drugs involved. This isn't required to eat food but will make it easier once I get to that point.
The second front is the one that I have been focusing on and that is my esophagus opening. So far that has been going well and most likely will take another 3-4 procedures to complete. My final goal is to get to somewhere over 15 MM and keep it there. Fortunately the doctor that is doing the procedures is taking a cautious approach to avoid any damage and has done quite a bit of research on the procedure. One of the nurses at the last procedure told me that they ordered in dilators just for this. Way to go GI doc!
The third front is dry mouth. I was aware this was going to be a problem but I wasn't aware of how much of a problem it would be. This is going to be the hardest one to solve. There are basically 2 parts of this problem that need to be addressed. First is the production of saliva. The second is the results of dry mouth on my mouth and the swallowing process. This is what I didn't realize, that dry mouth affects swallowing more than just a lack of liquid to chew food with. Dry mouth injures the oral cavity and that causes problems with swallowing. In my case the back of the tongue is sore when I try to swallow as a result of dry mouth and based on my meeting with the radiation doctor on Friday there is a large section of the back of my tongue that is coated with a thick cover of mucus. This appears to be where the current swallowing problem is coming from. Food particles are getting stuck at the back of the throat on what I have found out it the tongue. (BTW one thing I have found is that the tongue is a lot bigger than you realize. Its definitely several times larger than the part you use to eat an ice cream cone with or stick out at someone. :-)). This area is also near the part of the throat that covers your airway when swallowing. As you can imagine getting something stuck there has some interesting consequences. :-)
So the plan here is two fold. First tackle the cause of dry mouth and that is saliva production and second tackle the side effects in damage to the oral cavity from dry mouth. I had started somewhat on tackling the impact on my mouth. There are a series of products from a company called Biotene that are used to help treat dry mouth. These are essentially a special tooth paste, mouthwash and spray to help when your mouth is dry. I can say that they do have some positive impact. In addition the radiation doctor added a new drug into the mix that increases the production of saliva from the glands that are still intact. He also gave me a sample of a prescription mouthwash to use. This is supposed to help treat the effects of dry mouth. Last he took me off of the sea sickness patch. This patch was used to help control the mucus flow but it also increases dry mouth. He felt my body may have become dependant upon it to regulate the mucus flow. The downside is that the mucus flow is back but he feels that after a week or two it should subside. Fortunately at this time I am not dealing with all of the other issues that I was back when I was undergoing radiation and chemo therapy.
Hopefully the multi front approach of operation Garbage Plate will meet with success. The hardest part of all of this will be dealing with the mucus build up on my tongue that is causing food to get hung up on it. I had better get to work, there are Garbage Plates waiting to be eaten!
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