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....
Friday, February 19, 2010
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.
Sunday, February 14, 2010
2-14-2010
Today has been a set back. I guess I'm paying for 2 active days. Not active in the sense I once was, just active. With only 1 trip for fluids last week my skin is drying out. The rage is still as it was. I've never fully regained my balance or use of my left foot and leg which is weird. The pads of my feet are extremely tender and it still feels like lightening bolts ever time I step shoot through my body. All that while I freeze and my hands and feet stay numb everywhere else. Today, my fatigue was extensive along with a sick feeling in my stomach. Memory is gone, especially short term. Within 1 week I have lost 6 lbs.
While I glad that I am weaning off the patch, it did do more than I had thought. We ate at Captain D's yesterday and my throat was as if if were raw. I had forgotten just how bad it hurts, that reminded me. Weather permitting, I'll get my thyroid checked maybe tomorrow and fluids Tuesday or Wednesday.
My hair is trying to grow and I have a small go-tee. This is goig to take a lot more effort than I first thought.
While I glad that I am weaning off the patch, it did do more than I had thought. We ate at Captain D's yesterday and my throat was as if if were raw. I had forgotten just how bad it hurts, that reminded me. Weather permitting, I'll get my thyroid checked maybe tomorrow and fluids Tuesday or Wednesday.
My hair is trying to grow and I have a small go-tee. This is goig to take a lot more effort than I first thought.
Friday, February 12, 2010
02-12-10
Woke up in a touch more pain, but not much though. I'm just glad we're stepping down the patch and can't wait to do away with it.
I've stayed busy today running errands, Matt to Morristown to get his van, the to Sevierville to buy a welder, then to Russellville to do an inspection and BPO on a house, then the paperwork. I'm tired and I bet I will be paying for this day, lol.
My weight is 193. Not tickled about that but hey, I still made it without a feeding tube. We've begun the step down on the patch and today I woke with just a bit more pain, but nothing intolerable. My rash is still ongoing, have no idea.
I didn't go but once this week for fluids, I may go twice next week... naa, probably once. My feet still feel like the front pads are swollen, but they're not. It is extremely painful to walk, the left foot seems worse than the right foot. It is both front pads but only 1 heal that hurts. They are numb yet painful... how does that happen? That don't even make sense. Hey, I even drove myself!
I still have to watch and really focus on eating, least I get choked. The same goes for drinking. I attempted a Coke again today. Key word in that was attempted, lol.
On a good note... I'm beginning to get hair! It seems to be growing really fast on my head and chin. It still hasn't graced the rest of my body yet. The more it comes the warmer I feel. The pale death look is leaving and I am slowly getting some color back. Now if I could just build my muscles and stamina back. Then again this weather would need to cooperate. Bone pain seems to be the next order to tackle. Then again, swelling
going down where I can swallow normally would be nice. As soon as I can, I need the 5 or so teeth that radiation killed took out, that would help me chew.
Actually I'm in a good frame of mind today even though it may not seem it. I thought I'd just keep it real.
I never got my thyroid checked yet, need to.
I've stayed busy today running errands, Matt to Morristown to get his van, the to Sevierville to buy a welder, then to Russellville to do an inspection and BPO on a house, then the paperwork. I'm tired and I bet I will be paying for this day, lol.
My weight is 193. Not tickled about that but hey, I still made it without a feeding tube. We've begun the step down on the patch and today I woke with just a bit more pain, but nothing intolerable. My rash is still ongoing, have no idea.
I didn't go but once this week for fluids, I may go twice next week... naa, probably once. My feet still feel like the front pads are swollen, but they're not. It is extremely painful to walk, the left foot seems worse than the right foot. It is both front pads but only 1 heal that hurts. They are numb yet painful... how does that happen? That don't even make sense. Hey, I even drove myself!
I still have to watch and really focus on eating, least I get choked. The same goes for drinking. I attempted a Coke again today. Key word in that was attempted, lol.
On a good note... I'm beginning to get hair! It seems to be growing really fast on my head and chin. It still hasn't graced the rest of my body yet. The more it comes the warmer I feel. The pale death look is leaving and I am slowly getting some color back. Now if I could just build my muscles and stamina back. Then again this weather would need to cooperate. Bone pain seems to be the next order to tackle. Then again, swelling
going down where I can swallow normally would be nice. As soon as I can, I need the 5 or so teeth that radiation killed took out, that would help me chew.
Actually I'm in a good frame of mind today even though it may not seem it. I thought I'd just keep it real.
I never got my thyroid checked yet, need to.
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