I slept until 11 this morning. I would get woke up then go back to bed. Mom needed help on something so I finally stayed up and got it done and then came back home about 1pm and slept on and off until about 7. I am still tired so it will be an early night tonight.
My hair is growing back decently, I'm tickled. I am though hitting bouts of depression now. Unusual for me. I still feel like the tumor is growing back, Thursday, Rathfoot should look again and I will be pleased to know, yes or no. I'd rather it not be but either way, I can't wait for this to end. Denise says it's just scar tissue.
My weight continues to drop, I'm (last time looked) 192.5 lbs. Probably less now. Again today I resorted to the Morphine 15mg for the foot pain even though this morning I awoke for the first time and they didn't hurt. Unfortunately though it didn't last long. They hurt so bad Sunday that I used the handicapped parking pass, even at Sears when I got my tires put on. I just couldn't take the pain hoofing it too far. Other than to buy the grill me and Denise said we would when it goes on sale, I sat. Oddly enough, setting doesn't help that much but it does a little. The guys noticed the handicapped sticker and also noticed how I walked. How embarrassing. I hate using that parking pass.
Only 1 of the anxiety type attacks today... not bad.
Somehow I thought when the chemo and radiation was over that it was clear sailing. I was wrong. After a while one just gets tired and feels like tossing their hands in the air and saying enough. I'm almost to that point now.
Monday, February 22, 2010
Saturday, February 20, 2010
02-21-2010
A beautiful day today. Me and Denise went and ran and go a lot done. We retrieved my last real estate sign that I know of that was still up. It was on top of a mountain in Gatlinburg and there were still spots that had snow there. We put a sign up in Knoxville for mom and went to Morristown and got some stuff for mark to work on Spot. I started the day tired, now I'm exhausted, lol.
I still have intense pain in the ball and heel of my feet yet the rest of my feet are numb... strange. I still have the electrical charges that shoot for toe to head whenever I step hard. Their not painful but more aggravating than anything. It kinda scares you because it feels like a low voltage shock. The numbness has left my left side of my face and head finally, but tonight it is back.
Then there are these attacks, for lack of a better word. I'm not sure how to explain them and tonight I had an intense one. It is like something is building inside you, a stress level that effects you and even your thinking. Like an explosion building. My hands even tremble as well as my body. It seems that if activity like a TV show with stupid people is on and sometimes when I talk to the point I hurt, this time. I really need to make a log of them so I will know how to stop them. My paientence is at an end, I become nervous, anxious, and a whole host of feelings emerge at once and it feels like I am going to explode. That is the nest I can describe it. There are probably better ways and better choices of words and probably more, but that is the best I can do to explain it. I usually take an Atavan and eventually it stops, tonight I took a second one before it stopped. Maybe it would stop on it's own, I don't know. If it would it would be better than taking a pill, I'm sure it has side effects.
So far I have escaped Denise's cold so my immunity must be getting better. She is almost over it now. The breaking out is still occurring. It stops for a while then comes back. This is the first day since we dropped the patch to 50mg that I was able to eat and the breakthrough pain wasn't bad enough to take anything. That is a good sign. Next week I go to 25 mg and in about 2 weeks I go to none. Thank God. I would much rather go back to pills because I only take them if I need them whereas this patch gives me a constant supply of pain medication. I'm sure it was needed at the time but I would like to control when and if I need anything.
I've lost back down to 192.5 pounds. The appetite just isn't there. Then again, eating meant pain until today. It was somewhat painful but nothing like it has been. Soft drinks burn but I can drink them, Pepsi, Coke, Mountain Dew and probably Dr Pepper, I just don't like the Dr Pepper anymore. I just have chosen not to drink them. I prefer water, tea, SoBe (certain flavors) and vitamin water (certain flavors). Who would have even thought that, lol.
My hair is still coming in quick but it can't get here quick enough for me. I have a beard of sorts. You can see where the lines are that the hair follicles are burnt out, no hair grows there. It actually came up much farther than I thought and that is probably why the two teeth went on the bottom, I'm guessing the dentist was talking about three above those that I will lose.
We went to Walmart and again, I have maybe 20-30 minutes at best before my mouth and throat becomes dry. The drier it gets the worse the pain and it begin to crack open. There have even been times where it bleeds. This I know is a side effect of chemo that usually goes away but that sometimes it never goes away. I am praying that it does go away. I have almost gotten to the point of carrying water into a store with me. It takes quite a while to get it back moist enough to ease the pain. Usually I wake up at least twice a night and have to drink a few sips of water. It isn't as bad as it once was like when I woke up and had to present an answer before sipping water and cracked my throat severely. I went back to just one humidifier in my bedroom, the other I put in the Sunroom because the plants need it more than I do.
There is some depression still but I'm working on that. I keep thinking of what I have got going and try and figure out how to get back what I've lost. Most of this is on independence, strength, and memory. I think anything that drags out, like sickness, will bring about a certain level of it. First comes the frustration and then it is followed by depression. Then I suck it up and begin to figure out how I can change that.
I still each night think about those that I was in Radiation with, especially the lady that was taking mouth and throat radiation. I wonder how they are and pray each night for them. I go back next month to see Dr Green, but they will be done and gone by then. I pray they will be ok. I had the honor of meeting some of the strongest, kindest, most humbled people in the world, yet I never knew their names.
I still have intense pain in the ball and heel of my feet yet the rest of my feet are numb... strange. I still have the electrical charges that shoot for toe to head whenever I step hard. Their not painful but more aggravating than anything. It kinda scares you because it feels like a low voltage shock. The numbness has left my left side of my face and head finally, but tonight it is back.
Then there are these attacks, for lack of a better word. I'm not sure how to explain them and tonight I had an intense one. It is like something is building inside you, a stress level that effects you and even your thinking. Like an explosion building. My hands even tremble as well as my body. It seems that if activity like a TV show with stupid people is on and sometimes when I talk to the point I hurt, this time. I really need to make a log of them so I will know how to stop them. My paientence is at an end, I become nervous, anxious, and a whole host of feelings emerge at once and it feels like I am going to explode. That is the nest I can describe it. There are probably better ways and better choices of words and probably more, but that is the best I can do to explain it. I usually take an Atavan and eventually it stops, tonight I took a second one before it stopped. Maybe it would stop on it's own, I don't know. If it would it would be better than taking a pill, I'm sure it has side effects.
So far I have escaped Denise's cold so my immunity must be getting better. She is almost over it now. The breaking out is still occurring. It stops for a while then comes back. This is the first day since we dropped the patch to 50mg that I was able to eat and the breakthrough pain wasn't bad enough to take anything. That is a good sign. Next week I go to 25 mg and in about 2 weeks I go to none. Thank God. I would much rather go back to pills because I only take them if I need them whereas this patch gives me a constant supply of pain medication. I'm sure it was needed at the time but I would like to control when and if I need anything.
I've lost back down to 192.5 pounds. The appetite just isn't there. Then again, eating meant pain until today. It was somewhat painful but nothing like it has been. Soft drinks burn but I can drink them, Pepsi, Coke, Mountain Dew and probably Dr Pepper, I just don't like the Dr Pepper anymore. I just have chosen not to drink them. I prefer water, tea, SoBe (certain flavors) and vitamin water (certain flavors). Who would have even thought that, lol.
My hair is still coming in quick but it can't get here quick enough for me. I have a beard of sorts. You can see where the lines are that the hair follicles are burnt out, no hair grows there. It actually came up much farther than I thought and that is probably why the two teeth went on the bottom, I'm guessing the dentist was talking about three above those that I will lose.
We went to Walmart and again, I have maybe 20-30 minutes at best before my mouth and throat becomes dry. The drier it gets the worse the pain and it begin to crack open. There have even been times where it bleeds. This I know is a side effect of chemo that usually goes away but that sometimes it never goes away. I am praying that it does go away. I have almost gotten to the point of carrying water into a store with me. It takes quite a while to get it back moist enough to ease the pain. Usually I wake up at least twice a night and have to drink a few sips of water. It isn't as bad as it once was like when I woke up and had to present an answer before sipping water and cracked my throat severely. I went back to just one humidifier in my bedroom, the other I put in the Sunroom because the plants need it more than I do.
There is some depression still but I'm working on that. I keep thinking of what I have got going and try and figure out how to get back what I've lost. Most of this is on independence, strength, and memory. I think anything that drags out, like sickness, will bring about a certain level of it. First comes the frustration and then it is followed by depression. Then I suck it up and begin to figure out how I can change that.
I still each night think about those that I was in Radiation with, especially the lady that was taking mouth and throat radiation. I wonder how they are and pray each night for them. I go back next month to see Dr Green, but they will be done and gone by then. I pray they will be ok. I had the honor of meeting some of the strongest, kindest, most humbled people in the world, yet I never knew their names.
Friday, February 19, 2010
02-19-2010
Beautiful day today. I got a few things done but in the course, by the time the day was over I'm paying for it. I put new windshield wipers on both trucks, had tires put on Big Ugly, fixed Denise's rear door lift, and ran around. I got all the plants and tress in the Sunroom watered. Most importantly though, I got blood drawn for the thyroid test today.
Towards the end of the day a lot of break through pain and before night fall I broke down and took an Endocet and about 1AM had to take yet another.
The left side of my face and forehead, left foot and hand and arm went numb, except for the pain in my heels and in the ball of my feet, very tender. Rash is still in effect but mostly favoring my left side. The patch this time is on my left side. I'm wondering if there isn't a connection.
I'm back to losing weight again heading back to the lower 190s. Some of it is due to break through pain, some due to just lack of appetite. It still feels like a knot in my throat and swallowing is become more difficult. Denise thinks just scar tissue... I'm not so sure. My voice is still weak and gruffly and goes out after a while. The dryness continues but seems to be improving a little. I still carry about a bottle of water with me. I've went back to using Miracle Mouth Wash.
Denise is sick and hopefully I have enough resistance to ward it off. Crossing fingers....
Towards the end of the day a lot of break through pain and before night fall I broke down and took an Endocet and about 1AM had to take yet another.
The left side of my face and forehead, left foot and hand and arm went numb, except for the pain in my heels and in the ball of my feet, very tender. Rash is still in effect but mostly favoring my left side. The patch this time is on my left side. I'm wondering if there isn't a connection.
I'm back to losing weight again heading back to the lower 190s. Some of it is due to break through pain, some due to just lack of appetite. It still feels like a knot in my throat and swallowing is become more difficult. Denise thinks just scar tissue... I'm not so sure. My voice is still weak and gruffly and goes out after a while. The dryness continues but seems to be improving a little. I still carry about a bottle of water with me. I've went back to using Miracle Mouth Wash.
Denise is sick and hopefully I have enough resistance to ward it off. Crossing fingers....
Thursday, February 18, 2010
02-18-2010
This is today's. I'll quit posting as much as it goes along. This is looking more or less like a diary. Thank God that the drama seems to be slowing down, I'm ready. today the pain is all but gone, it didn't start that way but it has improved over the day. I never thought I'd get to this point at times, but I didn't get to this point on my on. God, family, friends, and a great staff of medical people. In no way did I get this far on my own. I have made new friends on this blog, renewed old friends.
I have HAIR! Well, at least it has started back, lol. It seems to be growing faster each day and for me it can't grow fast enough. I have somewhat of a beard for the first time in over 20 years. I'll probably shave it but I will take hair anywhere it wants to grow, plus it shows the lines of the radiation. The radiation burnt out the hair follicles and according to what I was told it will never grow there again which is most of my face and all of my neck. That mush I won't have to shave when I start back shaving. See, there is always a dry spot in the rain, lol. Try this. You can't bring darkness into a room of light and dim the lightness but you can bring a candle in a dark room and lessen the darkness.
I spoke with Erin Brown from National Geographic. If you read this I enjoyed our conversation and will watch for the new show and if I am selected maybe we can meet face to face.
Well, it's bed time again. Denise watched me eat the Cheeseburger she fixed tonight and by the time I was full I had sweated enough to look like I had taken a bath from the pain. It is almost like it was in the beginning. I can actually say this time that sweat actually ran down my hair, lol, rather than just off my skin. I took one of the humidifiers out to the Sunroom so that our plants could keep moist. The banana plants and palms are wanting outside asap. They have taken a beating this year, I haven't cared for them like I should have. I lost one of the rare ones but I didn't label it so I have no idea what it was.
My feet are still the source of a lot of pain and my hands are still numb but I think the B-12 shots are working on that. I skipped them over the last couple or three months and I knew better. This is the price I pay. My rash does seem to be diminishing slowly though. The attack only came once today of the nervous system or whatever that is that makes you feel like your going to just explode.
One of these days I'm going to list the things I used not prescribed but told to me by other people that helps in this. All are mentioned I think throughout the blog but having them all together I think would be better. I edited this page numerous times so I apologize for all the editing.
Next week can't get here soon enough. I especially can't wait to see Dr.Rathfoot and have him take another look now that the swelling and burns have lessened. It feels like it is growing back but it could be that with lesser pain medication I am feeling more than I did plus Denise has had a sore throat which is now turning into a cold. I should have enough to fend off something now, I think. If not we will work with what we have to work with again.
I have HAIR! Well, at least it has started back, lol. It seems to be growing faster each day and for me it can't grow fast enough. I have somewhat of a beard for the first time in over 20 years. I'll probably shave it but I will take hair anywhere it wants to grow, plus it shows the lines of the radiation. The radiation burnt out the hair follicles and according to what I was told it will never grow there again which is most of my face and all of my neck. That mush I won't have to shave when I start back shaving. See, there is always a dry spot in the rain, lol. Try this. You can't bring darkness into a room of light and dim the lightness but you can bring a candle in a dark room and lessen the darkness.
I spoke with Erin Brown from National Geographic. If you read this I enjoyed our conversation and will watch for the new show and if I am selected maybe we can meet face to face.
Well, it's bed time again. Denise watched me eat the Cheeseburger she fixed tonight and by the time I was full I had sweated enough to look like I had taken a bath from the pain. It is almost like it was in the beginning. I can actually say this time that sweat actually ran down my hair, lol, rather than just off my skin. I took one of the humidifiers out to the Sunroom so that our plants could keep moist. The banana plants and palms are wanting outside asap. They have taken a beating this year, I haven't cared for them like I should have. I lost one of the rare ones but I didn't label it so I have no idea what it was.
My feet are still the source of a lot of pain and my hands are still numb but I think the B-12 shots are working on that. I skipped them over the last couple or three months and I knew better. This is the price I pay. My rash does seem to be diminishing slowly though. The attack only came once today of the nervous system or whatever that is that makes you feel like your going to just explode.
One of these days I'm going to list the things I used not prescribed but told to me by other people that helps in this. All are mentioned I think throughout the blog but having them all together I think would be better. I edited this page numerous times so I apologize for all the editing.
Next week can't get here soon enough. I especially can't wait to see Dr.Rathfoot and have him take another look now that the swelling and burns have lessened. It feels like it is growing back but it could be that with lesser pain medication I am feeling more than I did plus Denise has had a sore throat which is now turning into a cold. I should have enough to fend off something now, I think. If not we will work with what we have to work with again.
02-18-2010 part 1
I skipped yesterday. Me and Charlie went to UT to get more fluids. I started about 8:30 am and finished a little before 1:00 pm. Usually they add something to relax me but they didn't this time. Actually it usually makes me sleep. I did sleep on and off but mostly I was awake. It wasn't as busy yesterday like it has been being, a good thing to see. They ladies there, especially Ruth, still worked hard. There are volunteers that hang out and come by ever so often to see if you need anything. Warm blankets, ice cream, drinks, and occasionally food.
I overheard a lady that came in and had a port talk with the nurses, she must have been a nurse that worked with them. They all seemed excited to see her and they sat and discussed on and off what she had been up to. The lady was a very happy person, extremely positive. Before she left, as she was dressing, she looked at the ladies and said something like, "Chemo Brain. There is such a thing you know. I've experienced it and people were right. It is real. We talked about it in my support group." One of the ladies asked if she had experienced it. She said that she had and used an illustration of, "Say I wanted to tell you about a carrot, I might say something like highway instead of carrot and not realize what I said." She then said, "You know, we don't fully understand Chemo yet and I'm finding that out. When people would tell us about crazy side effects, they probably exist but we dismiss them." They chatted a bit more and one of the nurses asked about the Chemo Brain and how long it lasts and that it always isn't an immediate side effect. The lady responded back different times, it can even go on for years... sometimes forever. Whoever this lady is, she had their respect as a fellow worker.
I haven't researched that yet. Actually I've heard the term Chemo Fog but never heard of Chemo Brain. That is perhaps the second scary part of this, the fact that they don't know all the side effects. Whats the most scary part of this? That those in charge don't listen. Imgine living in a real nightmare, no escape and those that are in charge don't believe you. That would be horrible. You would not be able to get any help, stranded and deserted by those who should be helping. Why is it that nobody listens to the average person? How many people did this lady disbelieve? She now knows and hopefully nobody will turn a deaf ear to her and maybe she can help to change that, but it will only be just one aspect of this unknown treatment.
The one thing I know for sure is that I don't know everything and I beg I always know this, especially if by my thinking I know everything someone suffers because of my arrogance. I thank God that this isn't one of my side effects and pray that it doesn't come my way. I think I know what the Chemo Fog is, maybe it was just all the drugs for pain in my system, but my thinking is foggy sometimes. Then again, that may be natural, lol. After my heart attack in 2005 I have a hard time with short time memory. Denise says it's selective. lol.
Anyway, during the time I was there I ran out of water towards the end. Instead of asking for something to drink I decided that I could wait...big mistake. By the time we switched out from Charlie's truck with mom's SUV and made it to Shoney's, I was in misery and it has taken until today to half way recover. My voice is still coarse but the pain finally went back to a tolerable level. I ended up taking pain pills twice yesterday, once when I got home and once before bed. I keep water close by and have since about the tenth session of radiation. This has gotten rather long so I'll do another post for today.
I overheard a lady that came in and had a port talk with the nurses, she must have been a nurse that worked with them. They all seemed excited to see her and they sat and discussed on and off what she had been up to. The lady was a very happy person, extremely positive. Before she left, as she was dressing, she looked at the ladies and said something like, "Chemo Brain. There is such a thing you know. I've experienced it and people were right. It is real. We talked about it in my support group." One of the ladies asked if she had experienced it. She said that she had and used an illustration of, "Say I wanted to tell you about a carrot, I might say something like highway instead of carrot and not realize what I said." She then said, "You know, we don't fully understand Chemo yet and I'm finding that out. When people would tell us about crazy side effects, they probably exist but we dismiss them." They chatted a bit more and one of the nurses asked about the Chemo Brain and how long it lasts and that it always isn't an immediate side effect. The lady responded back different times, it can even go on for years... sometimes forever. Whoever this lady is, she had their respect as a fellow worker.
I haven't researched that yet. Actually I've heard the term Chemo Fog but never heard of Chemo Brain. That is perhaps the second scary part of this, the fact that they don't know all the side effects. Whats the most scary part of this? That those in charge don't listen. Imgine living in a real nightmare, no escape and those that are in charge don't believe you. That would be horrible. You would not be able to get any help, stranded and deserted by those who should be helping. Why is it that nobody listens to the average person? How many people did this lady disbelieve? She now knows and hopefully nobody will turn a deaf ear to her and maybe she can help to change that, but it will only be just one aspect of this unknown treatment.
The one thing I know for sure is that I don't know everything and I beg I always know this, especially if by my thinking I know everything someone suffers because of my arrogance. I thank God that this isn't one of my side effects and pray that it doesn't come my way. I think I know what the Chemo Fog is, maybe it was just all the drugs for pain in my system, but my thinking is foggy sometimes. Then again, that may be natural, lol. After my heart attack in 2005 I have a hard time with short time memory. Denise says it's selective. lol.
Anyway, during the time I was there I ran out of water towards the end. Instead of asking for something to drink I decided that I could wait...big mistake. By the time we switched out from Charlie's truck with mom's SUV and made it to Shoney's, I was in misery and it has taken until today to half way recover. My voice is still coarse but the pain finally went back to a tolerable level. I ended up taking pain pills twice yesterday, once when I got home and once before bed. I keep water close by and have since about the tenth session of radiation. This has gotten rather long so I'll do another post for today.
Tuesday, February 16, 2010
02-16-2010
Another day, but a better one in some ways. More pain is seeping through when I eat, except the Banana Popsicles, lol. My left foot some better but the right is making up for it. Only threw up once, just a while ago, could have done without that, especially those that catch you off guard and go out your nose. OK, thats probably T.M.I. lol.
Been another lazy day. Did get some stuff done for mom, actually a lot. Tomorrow I'll rest up a bit.
Denise has a sore throat... sounds kinda like me, lol. I've heard that when your married long enough you start to look alike, never heard you would sound alike.lol. Hopefully she will feel better tomorrow.
.
If the snow ever quits I'll get more fluids.
Been another lazy day. Did get some stuff done for mom, actually a lot. Tomorrow I'll rest up a bit.
Denise has a sore throat... sounds kinda like me, lol. I've heard that when your married long enough you start to look alike, never heard you would sound alike.lol. Hopefully she will feel better tomorrow.
.
If the snow ever quits I'll get more fluids.
Monday, February 15, 2010
02-15-2010
Much better day today. Still extreme pain in feet and at the same time they are numb... definitely weird. Hands still numb and just a little throat pain after eating tonight, nothing major. My neck is still a little red and still burns a bit, like a mild sunburn.
I decided to let hair grow where it will, lol. My "soul patch" is salt and pepper and you can actually see the radiation lines, lol. It actually comes up pretty high on the lower jaw, higher than I though and where the two teeth I lost are located. I've been tempted to shave but I want to see where this goes. Amazing what boredom and a small mind will do,lol. The hair on my head is growing face but in the front where it was already thin, it looks like it may be thinner. It seems to be coming in salt and pepper too. No hair coming back anywhere else. My back neck line is higher than I had thought.
No nausea today for a change. As we go down on the patch, more pain shoots through. I'm curious to see what level it will be at the next drop. Not that I'm into pain, but I also don't want to be a junkie.
Bouts of fatigue but they don't last long. Bone pain and some of the nervous attacks. I haven't talked as much today, hard to believe, eh? Still struggling with hydration and weight. Rash seems it may be decreasing.
I went back on my blood thinners yesterday. Depression at times and brain fog.
Overall much better than yesterday.
I decided to let hair grow where it will, lol. My "soul patch" is salt and pepper and you can actually see the radiation lines, lol. It actually comes up pretty high on the lower jaw, higher than I though and where the two teeth I lost are located. I've been tempted to shave but I want to see where this goes. Amazing what boredom and a small mind will do,lol. The hair on my head is growing face but in the front where it was already thin, it looks like it may be thinner. It seems to be coming in salt and pepper too. No hair coming back anywhere else. My back neck line is higher than I had thought.
No nausea today for a change. As we go down on the patch, more pain shoots through. I'm curious to see what level it will be at the next drop. Not that I'm into pain, but I also don't want to be a junkie.
Bouts of fatigue but they don't last long. Bone pain and some of the nervous attacks. I haven't talked as much today, hard to believe, eh? Still struggling with hydration and weight. Rash seems it may be decreasing.
I went back on my blood thinners yesterday. Depression at times and brain fog.
Overall much better than yesterday.
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