Another day of rain. The neuropathy was worse today than normal. I'm not sure if I'm still paying for skipping the pill two days ago or maybe the rain or barometric pressure has something to do with the intensity of it. I talked with Sally and hers was worse today too. I know it sure does have a profound effect on my shoulder and sometimes knees. I did still manage to go to Walmart and get two trees, a Blueberry bush, and four Easter Lilllies. dad always got everybody one and I thought maybe he would like that. The trees I know I probably can't plant but I thought it would be something Josh and Brandon could do with me and Megan. Something they would always have to reflect back on one day.
Another day without no pain meds other than this patch, right up until tonight. Cajun Chicken Biscuit from Bojangles, while good, is not a smart move, lol. The acid reflux isn't as bad. I took Kim's advice on how to take the meds and eating too. The acid reflux though walks over the OTC ones and the insurance company will not approve two pills a day or the Nexxum. There is something seriously wrong when insurance companies can over ride a doctor's orders. They would rather spends thousands of dollars and chance a life as to spend a few hundred dollars to prevent the thousands and save a life. I fear this will get worse now.
Bad headaches and referred ear pain today along with swelling, but manageable with focus. My weight seems to be going back like it was. I smell food and gain weight, lol. I'm trying to not get back the belly I had to prep before chemo and radiation. The "chemo fog" seems a bit worse and focus on what I am doing was a bit off. I actually went into a ditch, missing a driveway. If something like that happens again, I will ground myself from driving again until I feel comfortable doing so. I think I was over focusing on blocking the pain. It sounds good, I couldn't use the sun was in my eyes, lol. I think today, I was paying for yesterday's activities. I have bouts of extreme fatigue that come out of nowhere. If I set down I fall asleep, so I try and not set down. I have to work on my consistency and duration I think to get myself back to where I was, and it looks like it may be harder and longer than I first thought it would be. Depression also seems to be a factor along with frustration. Mentally I want to do and think I can, provided I don't forget. Physically however, I wear out fast.
Thursday, March 25, 2010
Wednesday, March 24, 2010
03-24-2010
Beautiful day today. I managed to actually stay up this morning and get some playing done. My throat is well enough to once again sleep in the bed, now if I could get rid of this Sling Blade voice I'd be set. I done a stupid move again yesterday thinking I could cut one the pills for the neuropathy and I'm still paying for it today. Live and learn I guess. I added one today and it seems to be working out all but tonight.
I kept active with the beautiful weather but it doesn't look like I did. Washed dad's truck then backed it back into the garage, it still smells inside like dad. Fixed the battery cables on Big Ugly and put the back spear on the tractor. Moved all the old tires into the garage around back and covered them up. Cleaned up the yard. Mom called and we all met at Cracker Barrel and had lunch. Visited with Misty and the babies. It was just a perfect day. I wished I could have gotten more done but I got in trouble for doing that, lol. I haven't taken any pain meds today which is great. Now if I could just get rid of the patch.
There is a hissing in my right ear, sounds loud. I had it once today. Rathfoot said something about the pressure caused it and it should leave as the swelling goes away, if I remember correctly. There is a constant ringing and referred pain occasionally but the hissing only comes every once and a great while. The first time I heard it I thought Denise had a flat tire, it's that loud.
My CTCL is running wild and wide spread. I wore short sleeves today and really didn't want to get out into the public like that. While the Chemo stopped one cancer it seems to have allowed the other to run free. We meet with Green next month and plan to ask about using the NBUVB, Panella says I can provided I shield my neck. I still want to hear it from Green though.
I have went back to using the Miracle Mouth wash before bedtime. It seems to keep my mouth from drying out as fast but I still keep a bottle of water at bedside. I wake up every so often with a dry mouth. We are talking one where your tongue actually sticks to the roof of your mouth and extremely painful. My Saliva glands seem to be trying to work again somewhat. I also keep the biotene spray near at all times. Tonight the referred pain is in the left ear, the side that Rathfoot said was the worse and oddly enough, the opposite side the tumor was on.
I kept active with the beautiful weather but it doesn't look like I did. Washed dad's truck then backed it back into the garage, it still smells inside like dad. Fixed the battery cables on Big Ugly and put the back spear on the tractor. Moved all the old tires into the garage around back and covered them up. Cleaned up the yard. Mom called and we all met at Cracker Barrel and had lunch. Visited with Misty and the babies. It was just a perfect day. I wished I could have gotten more done but I got in trouble for doing that, lol. I haven't taken any pain meds today which is great. Now if I could just get rid of the patch.
There is a hissing in my right ear, sounds loud. I had it once today. Rathfoot said something about the pressure caused it and it should leave as the swelling goes away, if I remember correctly. There is a constant ringing and referred pain occasionally but the hissing only comes every once and a great while. The first time I heard it I thought Denise had a flat tire, it's that loud.
My CTCL is running wild and wide spread. I wore short sleeves today and really didn't want to get out into the public like that. While the Chemo stopped one cancer it seems to have allowed the other to run free. We meet with Green next month and plan to ask about using the NBUVB, Panella says I can provided I shield my neck. I still want to hear it from Green though.
I have went back to using the Miracle Mouth wash before bedtime. It seems to keep my mouth from drying out as fast but I still keep a bottle of water at bedside. I wake up every so often with a dry mouth. We are talking one where your tongue actually sticks to the roof of your mouth and extremely painful. My Saliva glands seem to be trying to work again somewhat. I also keep the biotene spray near at all times. Tonight the referred pain is in the left ear, the side that Rathfoot said was the worse and oddly enough, the opposite side the tumor was on.
Tuesday, March 23, 2010
03-23-2010
Had my appointment with Rathfoot. Sodas were not the answer to this one like with scar tissue. All that led to was pain killers afterward, lol. I think my brain stuck in stupid gear this time.
Rathfoot said that my acid reflux was worse and that I needed to take a pill in the morning and afternoon. He scoped my throat and said that it was in worse shape than right after my radiation. Between the acid reflux, talking a lot, and stress, it has taken its toll. He said that it looked like a bunch of "water balloons" in there. He said that even my Epiglottis was swelled too, which explain the choking. I wonder about the Banana Popsicles, they offer some relief, yet afterward a reflux. He put me on 20mg of Predisome twice a day and Dyfluken, one pill ever four days. I have no idea what I just typed, Denise told me what they were and what was said, lol. I just know I hurt and he gave me some meds. He said we may have to stretch my throat in the future. There is not a lot that can be done for the stress but the talking and reflux I can do something about. This may also be my fatigue.
Rathfoot said that my acid reflux was worse and that I needed to take a pill in the morning and afternoon. He scoped my throat and said that it was in worse shape than right after my radiation. Between the acid reflux, talking a lot, and stress, it has taken its toll. He said that it looked like a bunch of "water balloons" in there. He said that even my Epiglottis was swelled too, which explain the choking. I wonder about the Banana Popsicles, they offer some relief, yet afterward a reflux. He put me on 20mg of Predisome twice a day and Dyfluken, one pill ever four days. I have no idea what I just typed, Denise told me what they were and what was said, lol. I just know I hurt and he gave me some meds. He said we may have to stretch my throat in the future. There is not a lot that can be done for the stress but the talking and reflux I can do something about. This may also be my fatigue.
Monday, March 22, 2010
03-22-2010
I slept late today, about 10am. I went to Boyd and he is going to talk with Green about taking out the teeth I lost. I came home and goofed off a bit the hit the couch about 4pm, slept til 8pm, now I'm sleepy again.
The coke I drunk seemed to help a bit, I'll still sleep in the chair again tonight.
We see Rathfoot on.
The coke I drunk seemed to help a bit, I'll still sleep in the chair again tonight.
We see Rathfoot on.
Sunday, March 21, 2010
03-21-2010 night
I woke up this morning about 6:30, went back to sleep and slept until 8:30. I had a pretty decent voice this morning. The other post was actually more like 03-20 but I dated it because I wasn't paying attention, lol. Last night was very similar to that night...I slept in my chair. I walked what I considered normal because I polished my regular shoes and wore them to dad's burial. A lot of pain still after my ham episode but the bleeding has subsided. My saliva glands still aren't working properly. My throat is still swelled and I still sound like Sling Blade, lol.
I have the whistling in my right ear, like air being bet out. It doesn't hurt but can be distracting. Dad would have been proud of his funeral today and all those that took part in it. Thank you to all the ones that took part in it.
Denise is going to call Rathfoot tomorrow and see if he can see me early. Tonight, I sleep again in my chair.
I have the whistling in my right ear, like air being bet out. It doesn't hurt but can be distracting. Dad would have been proud of his funeral today and all those that took part in it. Thank you to all the ones that took part in it.
Denise is going to call Rathfoot tomorrow and see if he can see me early. Tonight, I sleep again in my chair.
03-21-2010
Well, I'm setting up tonight. It's 3:43am and I am tired but when I lay down or start to sleep, I can't get air. It feels like my throat has closed off and I simply quit breathing. I have some pretty weird dreams or something while this is happening. Then I awake and gasp for air. My feet are completely numb, not like numb from the neuropathy, along with my hands and chest pain. I just can't get enough air. I can her the flap thing sound like cards in a bicycle spoke. I even lay down and just simply stop breathing.
I kept it in control at dad's funeral. I seen people I haven't saw in quite a while. I figure I'll try it again. No pain though except for the dryness. I read somewhere about soda helping, this is my third glass of Pepsi. It burns terrible but at least if might just work. This morning I woke up and couldn't talk but after brushing me teeth and hacking and gargling, I regained my voice back to an extent.
I kept it in control at dad's funeral. I seen people I haven't saw in quite a while. I figure I'll try it again. No pain though except for the dryness. I read somewhere about soda helping, this is my third glass of Pepsi. It burns terrible but at least if might just work. This morning I woke up and couldn't talk but after brushing me teeth and hacking and gargling, I regained my voice back to an extent.
Friday, March 19, 2010
03-19-2010
My visit with Panella went ok today. He just prescribed more Morphine.
Big thing is dad. Friends will be received Saturday from 11-8pm Family from 11am-8pm. The funeral will be Sunday at 2pm at Farrar Funeral Home in White Pine. Sorry, I was exhausted last night.
Big thing is dad. Friends will be received Saturday from 11-8pm Family from 11am-8pm. The funeral will be Sunday at 2pm at Farrar Funeral Home in White Pine. Sorry, I was exhausted last night.
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