Wet and cold again today but Matt and me went to Pull-Apart, man did we have fun, or at least I did. I found the armrests that I needed and then some. The chemo fog set in again and I remembered Big Ugly having a cracked tail light, right and wrong both at the same time. I had Cody fabricate a flat Steel Bed for Big Ugly so the tail light I remembered was gone, no longer needed, lol. I guess I can just save it in case Spot ever needs one. We ate, went to Harbor Freight then home. Neuropathy and all, I made it around. It worsened as the day progressed.
Megan and me went to Sears and bought a new refrigerator. Ours is still working but it is old and cannot last long. We will probably use it for a spare but may give it away. Denise wasn't thrilled with the final cost but it was what we both agreed on and with the warranty even on sale over 1500.00! Things have gone up. Another thing marked off the list now.
The CTCL isn't letting up and my eyelids are pretty bad. My left side of the throat is hurting pretty bad and tossing referred pain into the right ear. Denise says its where I have been outside in the cold damp weather. I finally just before writing gave in and took a pain pill, but a lesser one. Denise's back is finally better ad Megan's Intestinal bug is gone, but I think she may have passed it to Misty and me.
If my body so sees fit, I have a lot to accomplish tomorrow. Help mom in the morning and maybe start the small area where the grill will go, actually I'd like to finish it an grill tomorrow night, a dream I know.
Monday, March 29, 2010
Sunday, March 28, 2010
03-28-2010
It is another wet and cold today but for some reason (I'm not complaining) my neuropathy backed off a bit in pain. Then again, I didn't do much today either. I did notice my head swimming when I went to Sears and by the time I went to Walmart, I needed a buggy to help maintain my balance. Buggies are big walkers. This was however a different balance thing, like spinning, even when sitting down. Even with a lot of gray hair I still love it yes Denise, even the beard.
After a brief stop by moms and talking a bit on the phone with Misty, Denise and I were sitting in the living room watching something on the History Chanel and I just hit another wall of cold and exhausted. I had these bouts all day periodically and I went into the bedroom and said I'd be back... I didn't. I slept from a little after five until about ten-thirty. It's after one am and I am about to go back to sleep again. Today I've had a lot of fatigue and depression. I have always had the ability to work to get things off my mind and this time I face it without that ability. Dad is truly missed yet I know he is in a better place.
The Non Hodgkin's Lymphoma is raging and is all over my body now. Funny, it appears they have killed one cancer and fed the other. I will still wait until I meet with Green next month to see if I can resume the NBUVB, it may have progressed past that now though. I have decided if it has, I will let it take it's course. That is not depression nor giving up rather just exhaustion speaking along with knowing what I can and cannot do, and what I am willing and not willing to do. There are a few things to get done that I have found in order to get my affairs in order.
My weight and hair have both increased. I welcome the hair, lol...not the weight. I have put myself on a diet until I can actually do physical work...a lot of it too. The only place I have a tan is my neck, which is still very reddish in color and still feels hot inside. My voice weakens quickly even with water or liquid to keep it moist. I go from a Sling Blade voice to no voice rather quickly and you know me, I like to talk.
I write what seems at time trivial to some and unrelated yet for those who go through this it will hopefully let them know, along with their family and friends, what the mental and emotional aspects that can be. That doesn't mean they will be. In part, this is like a diary now and I have opened up to say things you would not get from me when we talk. This is a game of hurry up and wait now, but isn't all life like that? In the meantime I want to open up just to let those who read and stumble across this that whatever they feel, its ok to feel it for we have all felt that before. There is religious preference in this to know what I know, you are not alone even in your darkest hour unless you want to be.
I would like to see more feedback on this blog, let me know what is and isn't, questions one might have. Things one might like more or less of. Things you wish to know.
Good Night and God Bless...........
After a brief stop by moms and talking a bit on the phone with Misty, Denise and I were sitting in the living room watching something on the History Chanel and I just hit another wall of cold and exhausted. I had these bouts all day periodically and I went into the bedroom and said I'd be back... I didn't. I slept from a little after five until about ten-thirty. It's after one am and I am about to go back to sleep again. Today I've had a lot of fatigue and depression. I have always had the ability to work to get things off my mind and this time I face it without that ability. Dad is truly missed yet I know he is in a better place.
The Non Hodgkin's Lymphoma is raging and is all over my body now. Funny, it appears they have killed one cancer and fed the other. I will still wait until I meet with Green next month to see if I can resume the NBUVB, it may have progressed past that now though. I have decided if it has, I will let it take it's course. That is not depression nor giving up rather just exhaustion speaking along with knowing what I can and cannot do, and what I am willing and not willing to do. There are a few things to get done that I have found in order to get my affairs in order.
My weight and hair have both increased. I welcome the hair, lol...not the weight. I have put myself on a diet until I can actually do physical work...a lot of it too. The only place I have a tan is my neck, which is still very reddish in color and still feels hot inside. My voice weakens quickly even with water or liquid to keep it moist. I go from a Sling Blade voice to no voice rather quickly and you know me, I like to talk.
I write what seems at time trivial to some and unrelated yet for those who go through this it will hopefully let them know, along with their family and friends, what the mental and emotional aspects that can be. That doesn't mean they will be. In part, this is like a diary now and I have opened up to say things you would not get from me when we talk. This is a game of hurry up and wait now, but isn't all life like that? In the meantime I want to open up just to let those who read and stumble across this that whatever they feel, its ok to feel it for we have all felt that before. There is religious preference in this to know what I know, you are not alone even in your darkest hour unless you want to be.
I would like to see more feedback on this blog, let me know what is and isn't, questions one might have. Things one might like more or less of. Things you wish to know.
Good Night and God Bless...........
Saturday, March 27, 2010
03-27-2010
I woke up this morning in a lot of pain both in the left side of my throat and referred ear pain. I basically started out the day with a hit of Morphine... not a good thing. my neuropathy was still raging but not as bad as yesterday, but close. We managed to get the taxes done late last night and went today and had them done at H&R Block, 500.00, but I'm glad its done now. That was some stress off.
I got very little actually accomplished today but I tried to take advantage of the beautiful day... just didn't quite work. Megan has an intestinal bug and Denise's back is still out. I had a hard time with balance but I'm not sure exactly why. I can now fully understand dad's frustration. mentally you know what to do but the body isn't willing and the mind will not retain some things that need to be done until it is too late to do them. If this is a glimpse into the future I hope that isn't right, if so, they can have it.
We went to Morristown to get a screw that Sears forgot to put in the new Grill, some pavers which God only knows how I will get them in place, Easter baskets, and look at refrigerators. Since the two main trucks are down we took dad's. This turned out to be good and not too good. I miss him dearly. Way too many memories for both of us. I know crying doesn't help this stuff but...
Maybe tomorrow will be better. This video is for Dad, Annie, Papa, Joe, Edna, Gerald, Keith, and The Old Man...
I got very little actually accomplished today but I tried to take advantage of the beautiful day... just didn't quite work. Megan has an intestinal bug and Denise's back is still out. I had a hard time with balance but I'm not sure exactly why. I can now fully understand dad's frustration. mentally you know what to do but the body isn't willing and the mind will not retain some things that need to be done until it is too late to do them. If this is a glimpse into the future I hope that isn't right, if so, they can have it.
We went to Morristown to get a screw that Sears forgot to put in the new Grill, some pavers which God only knows how I will get them in place, Easter baskets, and look at refrigerators. Since the two main trucks are down we took dad's. This turned out to be good and not too good. I miss him dearly. Way too many memories for both of us. I know crying doesn't help this stuff but...
Maybe tomorrow will be better. This video is for Dad, Annie, Papa, Joe, Edna, Gerald, Keith, and The Old Man...
Friday, March 26, 2010
03-26-2010
I made it exactly 57 minutes until I woke up in extreme pain from my mouth and throat drying out. I just gargled with Miracle Mouth Wash, took some Morphine which I have to wait until this pain eases then go back to sleep. My taste bugs and tongue are inflamed so even the (Liquid) Morphine burns. I took about 17mgs which I average when I do take it between 10-17, seldom do I do 20mg. The liquid mixed with water is easier to swallow than a pill an can be cut easier to a lower dosage. A pill I would have to get my mouth and throat wet with water, then a Yoo-hoo, the use something that has a coated texture, I use Yoo-hoos to swallow. I do that every morning. I keep Yoo-hoos just for that purpose. That is how I take my pills unless it is with milk, it lessens the chance of getting choked. I should have said that sooner, it may help someone else with this junk.
More later........ That little prep afforded me to sleep until 6am and I have awaken with the left side hurting mildly and I can still hear and feel the little flap thing fluttering when I breathe. I'm still tired so I may sneak in a few more minutes.
More Later.....
More later........ That little prep afforded me to sleep until 6am and I have awaken with the left side hurting mildly and I can still hear and feel the little flap thing fluttering when I breathe. I'm still tired so I may sneak in a few more minutes.
More Later.....
Thursday, March 25, 2010
03-25-2010
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.
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.
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.
Subscribe to:
Posts (Atom)