This week has been one of the toughest weeks since I finished my treatment. I'm not exactly sure what is going on, but I have lots of pain in three places - my PEG tube in my stomach, my tonsil in my throat and my teeth, of all things!
It turns out that my stomach tube was not infected, but there is now a granuloma that has formed next to the tube. This is basically scar tissue that forms when there is irritation, it heals, then becomes irritated again, etc. The stomach acid that is a normal part of having a PEG tube continues to irritate the skin around the opening, and this is rather painful.
The tonsil is still healing, much slower than I thought it would, but then again, I really did not know how long it would take to return to normal in the first place. My teeth are hyper-sensitive to heat and cold, to sugar, which I have effectively stopped eating, and to intense flavors such as toothpastes, sugarless gums, etc.
These things have been somewhat painful for the last few weeks, but this week, they became even more unbearable for some reason, so off to the doctor we went. After a blood test, he found that all my counts were low - red blood cells, white blood cells and platelets, too. Not low enough for a transfusion, but low enough for concern, so even more blood tests and a CAT san were ordered to look deeper.
The good news is that there is nothing wrong with my stomach tube, as was suspected. In fact, they really couldn't find anything except the low blood counts to be concerned over. Next thing to look at was bone marrow, and today, I had my backside drilled for a core sample. Even with the shot of novacaine, the last thing he does is pull the sample out, and that's a big ouch! I hope I don't have to do many of those.
Today's blood test showed a dramatic increase in platelet count, almost double what it was last week! That's really good news, so we're keeping our fingers crossed for the results of today's marrow test, due Wednesday.
I guess I just have to be prepared for a bit of up and down during this recovery process. I am so ready to be back to health. Makes me realize just how much I took for granted for so long. Be thankful for every breath you take!
Monday, November 24, 2008
Monday, November 17, 2008
Monday, November 17th Update
I was hoping to be all healed up by now, eating regular food, PEG tube all gone and healed, feeling strong and able to do all the things I do with the energy I'm used to doing them with.
The truth is that this is going to take a lot longer than I thought.
My tonsil is still raw and extremely painful, an open sore that is still sloughing off, nearly two months after the last radiation treatment. Any kind of citrus, tomato, salt, hot sauce (OUCH!), hot, cold or grainy food simply is much too painful to eat.
I still have almost no saliva, and within about a minute without a dash of water or tea, my entire mouth and tongue simply dry up. I know it's kind of hard to imagine, but when it happens, it is extremely uncomfortable and even painful. Chewing sugarless gum helps, but this presents another weird side effect.
I stopped sugar foods some time ago, due to the extremely sensitive nature of my teeth, but even sugarless gum is giving me trouble! I don't understand it, but it makes my teeth hurt just like sugar does. The only way I can chew even sugarless gum is with a healthy dose of Ibuprofen ahead of time!
My PEG tube that I still use for feeding more than half of my daily intake is becoming infected. I keep it very clean, but the slight leakage keeps introducing small amounts of stomach acid to the raw skin, making healing almost impossible. The result is another site where pain is almost constantly present.
SO, now I have more pain than I did when I was just finished with my treatment! Perhaps it is just the natural progression of this particular treatment process, I don't know. I have heard it said that 'it is always darkest, just before the dawn' and maybe this best describes what's happening.
All I know is that I will be glad when it is all over, and I can function normally and pain free! My energy level is better, but still only about 75 to 80% of normal. I am looking forward to being back to 100% again sometime soon.
The truth is that this is going to take a lot longer than I thought.
My tonsil is still raw and extremely painful, an open sore that is still sloughing off, nearly two months after the last radiation treatment. Any kind of citrus, tomato, salt, hot sauce (OUCH!), hot, cold or grainy food simply is much too painful to eat.
I still have almost no saliva, and within about a minute without a dash of water or tea, my entire mouth and tongue simply dry up. I know it's kind of hard to imagine, but when it happens, it is extremely uncomfortable and even painful. Chewing sugarless gum helps, but this presents another weird side effect.
I stopped sugar foods some time ago, due to the extremely sensitive nature of my teeth, but even sugarless gum is giving me trouble! I don't understand it, but it makes my teeth hurt just like sugar does. The only way I can chew even sugarless gum is with a healthy dose of Ibuprofen ahead of time!
My PEG tube that I still use for feeding more than half of my daily intake is becoming infected. I keep it very clean, but the slight leakage keeps introducing small amounts of stomach acid to the raw skin, making healing almost impossible. The result is another site where pain is almost constantly present.
SO, now I have more pain than I did when I was just finished with my treatment! Perhaps it is just the natural progression of this particular treatment process, I don't know. I have heard it said that 'it is always darkest, just before the dawn' and maybe this best describes what's happening.
All I know is that I will be glad when it is all over, and I can function normally and pain free! My energy level is better, but still only about 75 to 80% of normal. I am looking forward to being back to 100% again sometime soon.
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