I woke up at 5:30am this morning feeling decent but tired. Urinating is still hard to do and I feel a bit dehydrated. We soon headed off to UT, treatment #4 this go around or # 21 total. I only have 14 more left. My saliva has once again thickened and my throat is sore inside and burnt outside. I would have thought I had 2 weeks before this started again. I make sure that my neck is washed clean of any lotions and as soon as we are done, radiation lotion is quickly reapplied. We also redress it later in the day or evening too. I restarted using the Miracle Mouth Wash yesterday.
I feel asleep coming home and woke up only once to ask Denise if she wanted to eat at Shoneys. She laughed and said to look out... it was a little late for that. we were going down the driveway, lol. I told her i was going to sleep off the cocktail and boy did I ever. I woke up about 1pm and called Bill to see if he wanted to go look at the trailer, which we did. Piece of junk so we came back home and I feel asleep again. When I got home I may have woke up maybe twice from phone calls only to go back out.
My hands and pretty much my whole body feels numb. No temperature. Extreme thirst. Swallowing is getting harder to do again. Hopefully I can meet the buffer and surely a feeding tube will not be installed this late in the game. Denise said that the numbness is a side effect of one of the chemo drugs, I think Taxotere.
Today Megan's benefit explanations came in. I was approved for disability yesterday and Megan also gets to draw because she is under 18. We've decided to open a savings account and place it there for Megan's college. Funny, I never thought I would ever apply let alone draw disability.
As this year draws to a close I will retire my license for real estate. Something I should have already done but since I'd paid for the year and I kept the hope up of coming out of this a bit better than I am. I guess the main thing is I am coming out of this, or at least I pray I am.
My abscess tooth is going down and I pretty much have a jaw line again. Thursday they will do the root canal.Also Thursday I go and see Dr Rathfoot. I'm trying to stay awake long enough to eat and write this, then back off to bed again.
Happy New Year.
Thursday, December 31, 2009
Wednesday, December 30, 2009
12-30
Got up again this morning and felt pretty good. Left hand is still numb but that is about it. The pain in my jaw is slowly fading. I almost have a jaw line again. The hardest thing is getting all the lotion off my neck in the mornings before heading out. They want the neck clean and dry or else the radiation will increase in strength, we don't want that.
Tomorrow is the last day for this week, thank God. Already with just the first three I can feel the burn and my voice is back getting gruffly. No real pain yet though. I have not a hint of a beard and I am so thankful for that, shaving is painful. The session was a quick one today but again, two places where it seems to drill into my throat.
The lady that has throat and mouth cancer was back again today. She too had been burnt to a crisp and took two weeks off the same time that I did. Somebody graduated today and now my time moves up to 7:15am. I haven't seen the older man that is going through mouth cancer... God love him, he hasn't a clue what is in store. Even when you are told, it just doesn't sink in just how bad is bad.
Afterward, Denise wanted to go to Bass Pro for some tops she saw advertised, they were closed that early though. We went to Shoney's and ate. Get this, I have only ate there twice before, today was the third time and not consecutively. When I unrolled my silverware they remember and placed plastic in it instead of metal. That blew my mind. They remembered. Now that is service and pride in what you do. When we were done we went back to Bass Pro. Denise notices everything, included my shaky walk and exhaustion. She wanted to quit but hey, gotta build my strength somehow. I'll have to admit, I did come home and take a nap. Fatigue seems to be a large part of this.
I had mom send me a link to Fannie Mae's site and I went in and done a BPO tonight for her. Now that Rosie is there the two can learn to do them. I did enjoy doing it though. That is the reason for my late post tonight. I'll help them but it has to be from here for now as my health will allow until they get the hang of it... and I know they will. I always liked working with Chase and Fannie Mae. They aren't easy but they aren't hard once you learn what they want. If Sandra at Chase is reading this, hello, I miss talking with you.
I go to bed tonight at 203lbs. My goal will be 210 so that when the pain comes back again I will have a buffer.
Tomorrow, God willing, the weather will be favorable and Bill and I will go look at a car hauler that needs some work. Of course it will set for quite a while before I can work on it. I think maybe I'm trying to keep something lined up to do to build my strength back. Maybe it is a dream, but it's not a give up yet.
Tomorrow is the last day for this week, thank God. Already with just the first three I can feel the burn and my voice is back getting gruffly. No real pain yet though. I have not a hint of a beard and I am so thankful for that, shaving is painful. The session was a quick one today but again, two places where it seems to drill into my throat.
The lady that has throat and mouth cancer was back again today. She too had been burnt to a crisp and took two weeks off the same time that I did. Somebody graduated today and now my time moves up to 7:15am. I haven't seen the older man that is going through mouth cancer... God love him, he hasn't a clue what is in store. Even when you are told, it just doesn't sink in just how bad is bad.
Afterward, Denise wanted to go to Bass Pro for some tops she saw advertised, they were closed that early though. We went to Shoney's and ate. Get this, I have only ate there twice before, today was the third time and not consecutively. When I unrolled my silverware they remember and placed plastic in it instead of metal. That blew my mind. They remembered. Now that is service and pride in what you do. When we were done we went back to Bass Pro. Denise notices everything, included my shaky walk and exhaustion. She wanted to quit but hey, gotta build my strength somehow. I'll have to admit, I did come home and take a nap. Fatigue seems to be a large part of this.
I had mom send me a link to Fannie Mae's site and I went in and done a BPO tonight for her. Now that Rosie is there the two can learn to do them. I did enjoy doing it though. That is the reason for my late post tonight. I'll help them but it has to be from here for now as my health will allow until they get the hang of it... and I know they will. I always liked working with Chase and Fannie Mae. They aren't easy but they aren't hard once you learn what they want. If Sandra at Chase is reading this, hello, I miss talking with you.
I go to bed tonight at 203lbs. My goal will be 210 so that when the pain comes back again I will have a buffer.
Tomorrow, God willing, the weather will be favorable and Bill and I will go look at a car hauler that needs some work. Of course it will set for quite a while before I can work on it. I think maybe I'm trying to keep something lined up to do to build my strength back. Maybe it is a dream, but it's not a give up yet.
Tuesday, December 29, 2009
12-29
In stayed up too late last night talking on the web but woke back up about 5:30am, didn't go to sleep until about 2:30am. I was tired but felt kinda funny. Me and Denise headed out to do my treatment and I took my cocktail on the way down, all was normal except I was just heavily fatigued. There are a few spots that already I can feel it burn. I was hoping to get at least 1-2 weeks before the pain set in again. I had taken one of the Endocets too and Denise though it might be a bit much with the pain patch so I took off the patch. The day was foggy in memory. I did drink a chocolate milkshake from Hardees. Usually I don't like milkshakes.
We came back home where I could take my medicine for the abscesses and were headed back out to a place in Bean Station that had the used 10 ply tires for sale in the Smoky Mountain Trader paper. 100.00 for 4 decent ones and the tire shop that was selling those also said that tires were going up 30% thanks to a new law. So we went to Sears to get Denise some tires too. I kept feeling worse and more fatigued and was a bit snippy with her. usually I talk to people but I just said and some what was necessary.
We get back and I had to urinate, felt the need yet produced little water and painful at that. I remember the phone ringing and Megan (she stayed up all night) was saying something about going somewhere or something. I hit the bed. I woke up about 1:30 again feeling the need to urinate, but again it was painful and not very productive. I normally wake to a ringing phone but I didn't wake to anything. I slept until Denise woke me up mouth breathing again. I'm not sure what time it was. The bed was soaked in sweat and so was I. I was freezing and couldn't get warms. The blanket, bed, and pillow was soaked. She checked my temperature and it was normal. All of the pain medicine must have left my system by this time. I never knew how bad I hurt until then. I went and got a new patch and asked her to place it on me, then went back to bed.
Denise came in about 5:30pm and woke me up, said I was mouth breathing again.Like the first time when woke me, my mouth was dry and I felt dehydrated. I went to the bathroom and was able to urinate without pain and effort. My hands, feet, and face are numb feeling. I still feel dehydrated and a weird taste in my mouth. There is a thing on my left shoulder that feels like a pin prick at times. Short but not intense pain, like a rubber band being flipped. My jaw is still swelled but it appears to be going down. Its now almost 9pm and I am going to take a bath and maybe look on the web for my emails then go back to bed after Denise does my treatment on my neck and bottom of my feet. I've ate decent considering I have been awake long.I weigh in at 201.5 lbs.
We came back home where I could take my medicine for the abscesses and were headed back out to a place in Bean Station that had the used 10 ply tires for sale in the Smoky Mountain Trader paper. 100.00 for 4 decent ones and the tire shop that was selling those also said that tires were going up 30% thanks to a new law. So we went to Sears to get Denise some tires too. I kept feeling worse and more fatigued and was a bit snippy with her. usually I talk to people but I just said and some what was necessary.
We get back and I had to urinate, felt the need yet produced little water and painful at that. I remember the phone ringing and Megan (she stayed up all night) was saying something about going somewhere or something. I hit the bed. I woke up about 1:30 again feeling the need to urinate, but again it was painful and not very productive. I normally wake to a ringing phone but I didn't wake to anything. I slept until Denise woke me up mouth breathing again. I'm not sure what time it was. The bed was soaked in sweat and so was I. I was freezing and couldn't get warms. The blanket, bed, and pillow was soaked. She checked my temperature and it was normal. All of the pain medicine must have left my system by this time. I never knew how bad I hurt until then. I went and got a new patch and asked her to place it on me, then went back to bed.
Denise came in about 5:30pm and woke me up, said I was mouth breathing again.Like the first time when woke me, my mouth was dry and I felt dehydrated. I went to the bathroom and was able to urinate without pain and effort. My hands, feet, and face are numb feeling. I still feel dehydrated and a weird taste in my mouth. There is a thing on my left shoulder that feels like a pin prick at times. Short but not intense pain, like a rubber band being flipped. My jaw is still swelled but it appears to be going down. Its now almost 9pm and I am going to take a bath and maybe look on the web for my emails then go back to bed after Denise does my treatment on my neck and bottom of my feet. I've ate decent considering I have been awake long.I weigh in at 201.5 lbs.
Monday, December 28, 2009
12-28
I got a small amount of sleep last night, just a few hours. Me and Denise went to UT today. We saw Dr Bertoli, Dr Green was on vacation. Dr Huntsinger, when she called in my medicine said we should talk with the doctor, plus Green had said to see them before treatment. Bertoli is as nice as his reputation. He checked my neck out and we told him about the abscess tooth and he asked questions while looking at it. He then cleared me for round 2. He asked on a pain scale what the abscess was, I guessed 2-3 at best, then again I have the pain patch on. I told him at it's worse that it wasn't bad enough to take the morphine. I'm sure I needed it at the time, and that time may come again, but not this day. He did prescribe some Perceot, which I don't need, but we took it just in case.
I will have to say one thing for the doctors there, they will take the time to explain to you whatever you ask. They take their time. He said that as long as the bone wasn't affected and it was small tissue they weren't worried about it. Then he explained how the jaw bone can die. If you or a loved one goes through head or neck cancer, listen and do what they say when they say get your dental problems fixed and check to see if there are any. This is critical.
The ladies there were all very nice and welcomed me back. I have to admit that you do get attached to the ones giving you care. It is impressive how they care for what they do and just how hard they work. They took X-Rays today. It was a long session, but I had the cocktail already working. Even that however was pushed to the limits.
We then went over to Panella's to tell Ruth as instructed to by Huntsinger. Ruth was on vacation and another lady came out, haven't seen her before. She wasn't too nice and wanted to know what we wanted and suggested we see a dentist. Thank God she isn't my nurse. We informed her that we were just informing as we were told to do, that is all we were there for and that we were searching for a dentist. It is so funny the difference in people and I feel sorry for whomever she gets assigned to, or the doctor she represented. Nothing like Panella and his nurses.
Denise was quite please at what all I ate. We stopped at Shoney's and pigged out on the breakfast bar. I ate almost a whole plate of stuff. Man was we ever full. lol We called a dentist, I think her name is Amanda Green, across from Lowes. They agreed to see me at 11:15. I must be getting older, she looks so young. She seemed on top of the seriousness of working on a radiation patient. Her and her staff are good. In the X-Ray that goes all around she spotted yet another abscess, the first tooth that came out shortly after the beginning. We go the Thursday after this one to have a root canal done and she says she can save the tooth. Dentistry is a bit more expensive than I remembered. She understands the risks of a lot of work during this time, but she went over what needed to be done when this is all over. I think I like her so when this is all said and done, Denise was certainly impressed with her. I hope I got the name right. She was one of the only Dentist offices open. Doctors I think have it a lot rougher than dentists, doctors I know work all the time.
We got back and I called my brother to see if he still wanted to go look at the Flat Bed for Big Ugly, and he did. I called the guy and he had his forklift there so I took cash and we got it. Can you say doghouse? It was cold, I was tired. and the tractor's power steering wasn't working too well, so I placed it where I could at the time. That thing weighs between 1,000 - 1,500 lbs. It will be a long time before I can work on it and I may have to pay someone to, but it is here.
Me and Denise went out to eat. I needed this day. I helped go over the contract I was working on before I went down over the phone. We done that until tonight my voice was gone. It's been one of those long drawn out ones. This day has gone right for a change. Now that the day's at end, Denise cleaned and dressed my neck and bottom of my feet and maybe bedtime early. Naw, lol.
I thank God for this day. I think He knows what we need and when we need it.
I plan on eating everything I like while I can, while I can. As for drinks though, I think I'll just stick with Tea and water, least we forget milk. I tried a Coke again today and they just don't appeal.
I will have to say one thing for the doctors there, they will take the time to explain to you whatever you ask. They take their time. He said that as long as the bone wasn't affected and it was small tissue they weren't worried about it. Then he explained how the jaw bone can die. If you or a loved one goes through head or neck cancer, listen and do what they say when they say get your dental problems fixed and check to see if there are any. This is critical.
The ladies there were all very nice and welcomed me back. I have to admit that you do get attached to the ones giving you care. It is impressive how they care for what they do and just how hard they work. They took X-Rays today. It was a long session, but I had the cocktail already working. Even that however was pushed to the limits.
We then went over to Panella's to tell Ruth as instructed to by Huntsinger. Ruth was on vacation and another lady came out, haven't seen her before. She wasn't too nice and wanted to know what we wanted and suggested we see a dentist. Thank God she isn't my nurse. We informed her that we were just informing as we were told to do, that is all we were there for and that we were searching for a dentist. It is so funny the difference in people and I feel sorry for whomever she gets assigned to, or the doctor she represented. Nothing like Panella and his nurses.
Denise was quite please at what all I ate. We stopped at Shoney's and pigged out on the breakfast bar. I ate almost a whole plate of stuff. Man was we ever full. lol We called a dentist, I think her name is Amanda Green, across from Lowes. They agreed to see me at 11:15. I must be getting older, she looks so young. She seemed on top of the seriousness of working on a radiation patient. Her and her staff are good. In the X-Ray that goes all around she spotted yet another abscess, the first tooth that came out shortly after the beginning. We go the Thursday after this one to have a root canal done and she says she can save the tooth. Dentistry is a bit more expensive than I remembered. She understands the risks of a lot of work during this time, but she went over what needed to be done when this is all over. I think I like her so when this is all said and done, Denise was certainly impressed with her. I hope I got the name right. She was one of the only Dentist offices open. Doctors I think have it a lot rougher than dentists, doctors I know work all the time.
We got back and I called my brother to see if he still wanted to go look at the Flat Bed for Big Ugly, and he did. I called the guy and he had his forklift there so I took cash and we got it. Can you say doghouse? It was cold, I was tired. and the tractor's power steering wasn't working too well, so I placed it where I could at the time. That thing weighs between 1,000 - 1,500 lbs. It will be a long time before I can work on it and I may have to pay someone to, but it is here.
Me and Denise went out to eat. I needed this day. I helped go over the contract I was working on before I went down over the phone. We done that until tonight my voice was gone. It's been one of those long drawn out ones. This day has gone right for a change. Now that the day's at end, Denise cleaned and dressed my neck and bottom of my feet and maybe bedtime early. Naw, lol.
I thank God for this day. I think He knows what we need and when we need it.
I plan on eating everything I like while I can, while I can. As for drinks though, I think I'll just stick with Tea and water, least we forget milk. I tried a Coke again today and they just don't appeal.
12-28
1st Post:
Once tonight I awoke and I was numb in my feet and hands. My throat was sticky and sore feeling so I assume that I was mouth breathing. At 4:20am, Denise just woke me. she heard me mouth breathing from her room across the hall with her door partially open. Maybe my fears are unwarranted, I don't know, but I do know that it does some damage or at least it feels like it does. It's not long before we get up to go to UT so I may just stay awake. I'm not sure who to ask about this. Which doctor? If I ever had this problem before all of this started, I don't know about it or maybe it didn't have the same effect, or how to correct it. I think it goes back to even before the treatments but does it go back to before the cancer. What happens if nobody awakens me? So many questions.
Lisa and Cody brought me some of the wonderful sour dough bread she makes. Thank you both for that. I ate 4 thin pieces bathed and toasted in Amish butter and then smothered in Applebutter. If fattening and delicious go together, I should have gain a few pounds. I can't wait to make a sandwich from it with some turkey and cheese. That bread is even good just by itself. It was also very good to meet you Cody and remember... you can do this. You have wonderful, good parents and the apple never falls far from the tree. That gives you an excellent head start in life and it looks as though you are following it well.
Once tonight I awoke and I was numb in my feet and hands. My throat was sticky and sore feeling so I assume that I was mouth breathing. At 4:20am, Denise just woke me. she heard me mouth breathing from her room across the hall with her door partially open. Maybe my fears are unwarranted, I don't know, but I do know that it does some damage or at least it feels like it does. It's not long before we get up to go to UT so I may just stay awake. I'm not sure who to ask about this. Which doctor? If I ever had this problem before all of this started, I don't know about it or maybe it didn't have the same effect, or how to correct it. I think it goes back to even before the treatments but does it go back to before the cancer. What happens if nobody awakens me? So many questions.
Lisa and Cody brought me some of the wonderful sour dough bread she makes. Thank you both for that. I ate 4 thin pieces bathed and toasted in Amish butter and then smothered in Applebutter. If fattening and delicious go together, I should have gain a few pounds. I can't wait to make a sandwich from it with some turkey and cheese. That bread is even good just by itself. It was also very good to meet you Cody and remember... you can do this. You have wonderful, good parents and the apple never falls far from the tree. That gives you an excellent head start in life and it looks as though you are following it well.
Sunday, December 27, 2009
12-27
We have checked my weight this morning yet, another problem. The tooth that broke has now abscessed and has swelled my right side of my jaw as of last night it has swelled into my throat, right where the tumor is. Of all the luck. Last night the pain broke through all the pain medication, but I didn't take any Morphine. Some bloody spit came out a few time and a horrible taste is in my mouth.
I'm not sure if it is related or what but I became dizzy last night and I still am. We talked about going to the ER but the risk of infection is too great considering a UT dentist said that ER is not equipped for dental. It would be a source to get some Penicillin and one would think that a doctor could lance the gum or something to give this stuff an exit. Rama is out of town or we could get him to call me in some and Deb isn't home.
I told Denise wouldn't that be ironic, live through all this just to be took out by a tooth. From what I've read it is on the bottom and that can lead to the heart. I always keep Nitro but I think that would be like taking a whiz on a forest fire to put it out.
Later:
Bingo. We called the emergency number for Dr Panella and Dr Huntsinger called us back with 10 minutes. She is calling me in some Penicillin at Wal-Greens.
Tonight:
We got the medicine and hopefully it works. The swelling has gone down a bit but it still lacks a lot. It has swelled the side of the throat the tumor was on. We go tomorrow for a treatment but Dr Huntsinger wants us to inform and have Dr Green look before and decide if he should treat it or wait. Then we were instructed to call Ruth. The swelling went down the right side of my jaw and right into the part of the throat where the tumor was. Go figure, lol. Hopefully I can get into a dentist tomorrow and get a root canal done then later, after radiation is done I will have the remains extracted. Pulling seems to be quite a lengthy process during radiation so I'll postpone that. That is tooth # 2 I've lost so far during all of this.
I have only one more hole in my neck left and a few smaller spots that are still pretty burnt. The make shift meds slowed the swelling down so maybe now that I have the proper meds it will get even better. I messed with it a bit and got plenty of pain from it so far and it's all I remembered an abscess to be. I still wear the pain patch but I really don't like the Morphine so I haven't taken any today. I have stuff that will numb it, I used it on my throat and will need it yet again when the radiation gets back cranked up. I'll just eat the pain because the pain that is coming from the radiation will be intense again, a pain you just can't eat.
Tomorrow and for the next few days to a week I will enjoy eating what I want again before the pain sets in and I go back to even hurting when I drink water. I even ate some apple pie and ice cream today and ketchup. These will be intolerable by the first or second week of radiation. I weigh in at 199 lbs tomorrow. It should look about 204 at the doctor's office. I have to get a bit larger buffer for when the pain comes and eating and drinking will be hard again. Just 18 more treatments. First week shouldn't be bad but progressively get worse as it goes, based on the last time.
I'm not sure if it is related or what but I became dizzy last night and I still am. We talked about going to the ER but the risk of infection is too great considering a UT dentist said that ER is not equipped for dental. It would be a source to get some Penicillin and one would think that a doctor could lance the gum or something to give this stuff an exit. Rama is out of town or we could get him to call me in some and Deb isn't home.
I told Denise wouldn't that be ironic, live through all this just to be took out by a tooth. From what I've read it is on the bottom and that can lead to the heart. I always keep Nitro but I think that would be like taking a whiz on a forest fire to put it out.
Later:
Bingo. We called the emergency number for Dr Panella and Dr Huntsinger called us back with 10 minutes. She is calling me in some Penicillin at Wal-Greens.
Tonight:
We got the medicine and hopefully it works. The swelling has gone down a bit but it still lacks a lot. It has swelled the side of the throat the tumor was on. We go tomorrow for a treatment but Dr Huntsinger wants us to inform and have Dr Green look before and decide if he should treat it or wait. Then we were instructed to call Ruth. The swelling went down the right side of my jaw and right into the part of the throat where the tumor was. Go figure, lol. Hopefully I can get into a dentist tomorrow and get a root canal done then later, after radiation is done I will have the remains extracted. Pulling seems to be quite a lengthy process during radiation so I'll postpone that. That is tooth # 2 I've lost so far during all of this.
I have only one more hole in my neck left and a few smaller spots that are still pretty burnt. The make shift meds slowed the swelling down so maybe now that I have the proper meds it will get even better. I messed with it a bit and got plenty of pain from it so far and it's all I remembered an abscess to be. I still wear the pain patch but I really don't like the Morphine so I haven't taken any today. I have stuff that will numb it, I used it on my throat and will need it yet again when the radiation gets back cranked up. I'll just eat the pain because the pain that is coming from the radiation will be intense again, a pain you just can't eat.
Tomorrow and for the next few days to a week I will enjoy eating what I want again before the pain sets in and I go back to even hurting when I drink water. I even ate some apple pie and ice cream today and ketchup. These will be intolerable by the first or second week of radiation. I weigh in at 199 lbs tomorrow. It should look about 204 at the doctor's office. I have to get a bit larger buffer for when the pain comes and eating and drinking will be hard again. Just 18 more treatments. First week shouldn't be bad but progressively get worse as it goes, based on the last time.
Saturday, December 26, 2009
videos I like -Page 1
Keeping track a bit of videos I listen to: I'll add as found.
The first 4 are what I listened to each night. Before I knew I had throat cancer, I listened to every night and made my peace with God. I really didn't expect to wake up each morning. This went on for weeks. I would fight to stay awake and just as I would give out, I had these copied on my computer.
The first 4 are what I listened to each night. Before I knew I had throat cancer, I listened to every night and made my peace with God. I really didn't expect to wake up each morning. This went on for weeks. I would fight to stay awake and just as I would give out, I had these copied on my computer.
12-26 late post
Well we definitely now know that the tooth is live and abscessing. The right side of my lower jar is swelled. Hopefully this will have no impact on my radiation. I am so past ready for this thing to be over. Hopefully we can find a dentist that is open and willing to do a root canal and that way the pressure and puss can get out. When I was attending my family physician we still thought it was a sore throat and I was instructed to stop taking the antibiotics I was on. Guess what, I found them and started taking them for this along with Ibuprofen. My jaw is still swelled and who knows, it may be painful but with the pain patch on and the Morphine if I need it, it doesn't hurt.
I slept on and off all day, even watched a movie. At one time I gain back to 199 but I've since dropped back to 198.5 lbs. I was even able to eat apple pie! I'm not making the same mistake of drinking a Coke tonight and I've only drank 1 small glass of Pepsi. These are things that I will not be able to do very soon when radiation starts and I imagine that my throat will be back like it was in a couple of weeks. Even water hurts then.
I watered the plants in the Sunroom. I've got three banana plants that have pups, two have two each. Mark came back and got their presents, he said he liked his. William came back and we talked about a steel flat bed I've found on Craigslist.org. My fight is coming back in me. I think sometimes we just hit a wall, or at least I did. Denise and Matt took two trucks loads o trash from both houses to the dump in Big Ugly. That is who the bed is for. It ran well for them.
Denise doctored the bottom of my feet again, probably the last place left with pain from the chemo. Most of the scars are healed on the rest of my body. I noticed that the Non Hodgkin's Lymphoma has even took a hit in all but a few places. I'll ask Dr Green in our next visit if I should hit the rest with the Narrow Band UVB machine, but that be a bit much. If it is then I'll just ignore it. Since I have my own machine to give myself treatments it's no big deal. even the patches left of it aren't painful right now.
Today, except for the tooth has been a great day compared to the last few weeks. Now if just could ever get warm again. I'm about ready for bed.
Cody. I didn't know how to respond back to your message on Facebook. I'm still learning a lot on it, so I will place it here. I'm not smart or I would not have stayed on the road I was on, but thank you for the compliment. Your mom loves you and cares about you and your brother. You can quit. There is nothing about quitting that is easy and if you fail, try again. I have tried many times and if I fall again, I will get right back up again and try. You are young and strong minded and strong willed. Strength is not measured by life's fall or failures but rather by getting back up and trying again. Falling does not define a man, a man is defined by what he does after he falls. If you even need to talk just call me or email me. I looked for a certain video I found last night but couldn't find it for you. This one is second to that one. One of the most powerful words ever created is BELIEVE. Believe in yourself and believe in God.
I slept on and off all day, even watched a movie. At one time I gain back to 199 but I've since dropped back to 198.5 lbs. I was even able to eat apple pie! I'm not making the same mistake of drinking a Coke tonight and I've only drank 1 small glass of Pepsi. These are things that I will not be able to do very soon when radiation starts and I imagine that my throat will be back like it was in a couple of weeks. Even water hurts then.
I watered the plants in the Sunroom. I've got three banana plants that have pups, two have two each. Mark came back and got their presents, he said he liked his. William came back and we talked about a steel flat bed I've found on Craigslist.org. My fight is coming back in me. I think sometimes we just hit a wall, or at least I did. Denise and Matt took two trucks loads o trash from both houses to the dump in Big Ugly. That is who the bed is for. It ran well for them.
Denise doctored the bottom of my feet again, probably the last place left with pain from the chemo. Most of the scars are healed on the rest of my body. I noticed that the Non Hodgkin's Lymphoma has even took a hit in all but a few places. I'll ask Dr Green in our next visit if I should hit the rest with the Narrow Band UVB machine, but that be a bit much. If it is then I'll just ignore it. Since I have my own machine to give myself treatments it's no big deal. even the patches left of it aren't painful right now.
Today, except for the tooth has been a great day compared to the last few weeks. Now if just could ever get warm again. I'm about ready for bed.
Cody. I didn't know how to respond back to your message on Facebook. I'm still learning a lot on it, so I will place it here. I'm not smart or I would not have stayed on the road I was on, but thank you for the compliment. Your mom loves you and cares about you and your brother. You can quit. There is nothing about quitting that is easy and if you fail, try again. I have tried many times and if I fall again, I will get right back up again and try. You are young and strong minded and strong willed. Strength is not measured by life's fall or failures but rather by getting back up and trying again. Falling does not define a man, a man is defined by what he does after he falls. If you even need to talk just call me or email me. I looked for a certain video I found last night but couldn't find it for you. This one is second to that one. One of the most powerful words ever created is BELIEVE. Believe in yourself and believe in God.
12-26
It's 2:34am. I watched a couple of movies... lost track of the time watching Avatar. I ate a little more each time and attempted to strengthen the tooth, but I failed to. The Morphine doesn't do a thing for it but Ibuprofen seemed to help. I tried to coat the sides that are exposed with temporary dental fill, even tried Gorilla glue, neither worked. If it will just hold out until a dentist can be found I can get a root canal. They say that pulling a tooth during radiation is a lengthy process so it can be extracted after the radiation is finished, just can't fight or need the infection with my blood count this low. The pain is all I remember it to be. A different pain than all of this, but pain all the same. I weighed and got back to 197.5 lbs. Now if I can eat like this today and gain again I will be happy. I'm crossing my fingers that Green will know of somebody Monday or that we can find somebody. Most dentist offices are closed until Jan 4th.
Yesterday was one of the few times Denise has ever seen me cry. Over 20 years of marriage she could probably count them on one hand and still have fingers left. I have no doubts where I will go when I die, but somehow it saddened me because I know how close I am to winning, yet how close I am to losing this battle as well. I think all the pressure just built up. I have no idea where that came from or for that matter why I would even admit that I did it on this blog. I have fought hard battles before but none like this, and none with this much that just keeps coming against me. It is like seeing the finish line on the horizon but your body giving out before you get there.
My limbs and trunk have all scabbed over and many of the scabs are even healed from the chemo backfire. My throat jumped again today in healing and Monday looks better than before.
5AM
My tooth has hurt now for days and I even skipped and skimped eating trying to keep it from breaking off, at least until a dentist could be located. I still haven't slept. I got tired of hurting and worrying about it so I pulled and twisted it until it popped off. The pain isn't as of yet any stronger and maybe just a bit less. I'm still not sure if this tooth had a root canal done to it yet but if it hasn't, the nerve is covered from the air. It could have just been just putting pressure on my gum. Guess we'll see in the next few hours or days.
Yesterday was one of the few times Denise has ever seen me cry. Over 20 years of marriage she could probably count them on one hand and still have fingers left. I have no doubts where I will go when I die, but somehow it saddened me because I know how close I am to winning, yet how close I am to losing this battle as well. I think all the pressure just built up. I have no idea where that came from or for that matter why I would even admit that I did it on this blog. I have fought hard battles before but none like this, and none with this much that just keeps coming against me. It is like seeing the finish line on the horizon but your body giving out before you get there.
My limbs and trunk have all scabbed over and many of the scabs are even healed from the chemo backfire. My throat jumped again today in healing and Monday looks better than before.
5AM
My tooth has hurt now for days and I even skipped and skimped eating trying to keep it from breaking off, at least until a dentist could be located. I still haven't slept. I got tired of hurting and worrying about it so I pulled and twisted it until it popped off. The pain isn't as of yet any stronger and maybe just a bit less. I'm still not sure if this tooth had a root canal done to it yet but if it hasn't, the nerve is covered from the air. It could have just been just putting pressure on my gum. Guess we'll see in the next few hours or days.
Friday, December 25, 2009
12-25 Christmas Day
I slept on and off until 1pm. A very rough night last night. I ran a fever on and off all night long and mouth breathed (Denise woke me up on occasion several times). I weighed in at 194 this morning. Surely I didn't sweat 3 1/2 pounds off over night! That is 1 pound under the limit. Denise gave me some slices of ham and Ritz crackers to eat and I am washing it down with Ensure. God, what I would give to have refused that last Chemo. Things have went to pieces after that. I am so tired of fighting. It seems pointless to continue. This ham... these crackers.. nothing tastes good anymore. 2 Deviled eggs.. nope, still the same.
Later On
It's 5pm and I'm trying to get the will to fight back. Charlie and mom came back, Charlie came first. He gave me a pep talk. Normally I don't respond well to them but somehow his works. He is a good man. It made me realize just how fortunate I have been my whole life. Some people have a mom and dad... I have a few moms and dads... and they are all good people. After they left I had enough spirit built up to grab a mask, get dressed and start so that I could eat and be with everybody. I made it to the creek and though I wanted to keep going my body was just too weak so I came back to the house. I was so tired that I drifted off in a nap. Denise called UT since a dentist office is located there, but they are closed to the 4th of January too. Down I went again until Mat & Misty and the grand-kids came to open their presents. That again lifted my moods and I ate several bites of turkey & dressing. Amazing what just having the people you love can do just being there. They got me 10th Avenue North's new CD. Me and Misty cam back here to my bedroom and watched some of the music videos I listen to sometimes. Some of those are found on this blog. I think I will listen some more. I may record some more on this day later. Right now though, I'll listen to some more. The main thing in this is to keeping fighting... and that is hard to do.
Later On
It's 5pm and I'm trying to get the will to fight back. Charlie and mom came back, Charlie came first. He gave me a pep talk. Normally I don't respond well to them but somehow his works. He is a good man. It made me realize just how fortunate I have been my whole life. Some people have a mom and dad... I have a few moms and dads... and they are all good people. After they left I had enough spirit built up to grab a mask, get dressed and start so that I could eat and be with everybody. I made it to the creek and though I wanted to keep going my body was just too weak so I came back to the house. I was so tired that I drifted off in a nap. Denise called UT since a dentist office is located there, but they are closed to the 4th of January too. Down I went again until Mat & Misty and the grand-kids came to open their presents. That again lifted my moods and I ate several bites of turkey & dressing. Amazing what just having the people you love can do just being there. They got me 10th Avenue North's new CD. Me and Misty cam back here to my bedroom and watched some of the music videos I listen to sometimes. Some of those are found on this blog. I think I will listen some more. I may record some more on this day later. Right now though, I'll listen to some more. The main thing in this is to keeping fighting... and that is hard to do.
Thursday, December 24, 2009
12-25 - 130 am Christmas
I started another fever again, but so far it has been low grade. I was here by myself and called my step dad that I may need him and told him what was going on. As always, he was there and willing to go then if I wanted to but I wanted to wait until the magic 101.5. I don't want to go if it is not 100% necessary. Denise got back home and I stayed up and ate some pudding and waited it out. It went back to normal but the sweating and shaking continued.
Denise awoke me at about 1:05am. She could hear me "mouth breathing" from the Living Room. My throat felt like it was closing completely off and my tongue was sticking to it, almost like I was swallowing it. We checked the temperature, normal. With enough water it began to go back... that and coughing. Then I started doing something I usually only have happen in the day, shaking like I was freezing and my hands became numb. If I get under the cover during this I sweat. I've only had these episodes since the 4th Chemo treatment. This usually lasts about 20 minutes to an hour. The fever is usual but the little episodes aren't... just not this time of day (or night). During the day I lay still and they eventually go away.
I'm glad Denise heard and woke me up though... this weird throat closing part hasn't happened since I was in the hospital. We try to deduce what is what, no conclusions so far but she thinks it is one of the many possible side effects of one of the chemo drugs that she read somewhere. maybe they may have even mentioned it in the hospital. I debated on placing this up but w both agreed that if I am going to record this stuff, it should be one of the things that someone else might have an answer for or someone going through this should know. I don't freak out as bad if I see someone else had something I'm experiencing.
Denise awoke me at about 1:05am. She could hear me "mouth breathing" from the Living Room. My throat felt like it was closing completely off and my tongue was sticking to it, almost like I was swallowing it. We checked the temperature, normal. With enough water it began to go back... that and coughing. Then I started doing something I usually only have happen in the day, shaking like I was freezing and my hands became numb. If I get under the cover during this I sweat. I've only had these episodes since the 4th Chemo treatment. This usually lasts about 20 minutes to an hour. The fever is usual but the little episodes aren't... just not this time of day (or night). During the day I lay still and they eventually go away.
I'm glad Denise heard and woke me up though... this weird throat closing part hasn't happened since I was in the hospital. We try to deduce what is what, no conclusions so far but she thinks it is one of the many possible side effects of one of the chemo drugs that she read somewhere. maybe they may have even mentioned it in the hospital. I debated on placing this up but w both agreed that if I am going to record this stuff, it should be one of the things that someone else might have an answer for or someone going through this should know. I don't freak out as bad if I see someone else had something I'm experiencing.
12-24 Thursday Christmas Eve
I woke up as usual this morning early, about 7am. Done my usual one cough of puss and blood and felt pretty decent. Now that I put a new filter in the cool mist humidifier and the warm mist humidifier ran all night, not nearly as painful or dry in the throat area. I brushed my teeth. I do that several times a day and even with that it has taken it's toll on my gums, even my bridges are beginning to loosen. The tooth I broke yesterday is still hanging on and I am pretty sure it is alive because there is some pain coming from it. Now I find it funny that I am afraid of the pain after going through this so far, but God help me I am. I guess I'm just so tired of hurting. I've got the preps.
Me and Denise finished our Christmas shopping today. Not exactly in the conventional way, but we got it done right up until the last present, her cell phone went dead. It still turned out good. She knew what she wanted to get her family and I shopped online at local stores telling her what I was looking at. I'm still neutropenic, that is the word I have probably misspelled many times, lol. I'm not sure since I left the hospital how mine is right now, but I will assume since I feel better, better. I can write this now since Denise has already got it, but that is the way I got her present. It wasn't the exact watch I was looking at, but it was one of the two. Me and Annie worked like that yesterday as a team to get Denise's and Beulah's, plus the new filter for the humidifier. It, in spite of the slight difference on 1 item worked so well that me and Denise done it that way.
My hat's off to Denise. She has done everything and has done it so great. She is reading this right now and said she didn't see me in that car today, where'd the we come from, lol. Then again... it was my brainstorm to do it like this, lol.
One thing I didn't put yesterday was that I tried some of the Blue Emu oil throughout the day. It lasts longer, burns about the same on the application, yet I don't know if it heals the same. We are low on the radiation creme and I think the only place to get it is at the radiologist's office, so I thought it worth a try. I had read some pretty good comments on a throat radiation board about it and a couple of other things. When my bath is done tonight Denise will clean and dress my throat with the radiation creme. I'm a bit worried still about it being ready by Monday but it seems to be healing fast, just hope it is fast enough.
No Morphine so far today, the pain patch have kept it under control. Before the bath though I'll take a 15 mg and by the time I'm done it should have kicked in. That is less than 1/2 we used at the hospital and while the healing is responsible mostly for the drop, there is still a lot of pain associated with the treatment. I don't like the effects at 15 and definitely don't at a higher dose, I can take the 10-15 minutes of pain better. Plus with higher dose I get those blank moments or crazy thoughts and moments, even afterward not knowing what I said or was saying in the middle of a sentence. I call them brain farts, lol.
I woke up and kept my 197 lbs! No loss last night. Today I have ate 4 sugar cookies, 2 Ensures, and I'm on my 4th Coke. I also ate 1/2 Pimento sandwich and 1/2 a Chicken Salad sandwich. If I can stay awake I'll add to that so maybe I can slowly turn this stuff around. The hardest thing to do is drink the Coke, I hate then taste of soft drinks. I know that can't last though as with 17-18 more treatments left my throat will become too raw again. My preference these days is water and some tea.
Last few day a weird thing that is getting more frequent is taking place. I get those fast, out of nowhere tired spells. I couldn't fight them off for a long time but as chemo went farther away I could, and still can. Now a strange muscle jerk occurs usually in my arms, hands, feet, or neck. The longer I fight the fatigue the worse they get and I kinda like dose off for a second, maybe zone out is a better term. I've decided to lay still and not fight them too much. It isn't painful... just weird. I could have probably gotten more eaten today if I could stay awake. If the fatigue hits with a chill, when I lay down I go back out like a light and unless I do one of those muscle jerks, I'm asleep. One of my cousins came to visit and one of my friends and both times I was out of it. Such a pretty day too, not that I could do anything, it's just nice to look out. I've spoken with both BB and Andy and they understood. Thanks guys.
I'll probably blog tomorrow since I can't be around everybody. It sounds kind of sad in a way because it is one of the few times we get together. Then again... it could have been worse. Maybe next year. All thosen who are reading this. I wish you a Merry Christmas.
Me and Denise finished our Christmas shopping today. Not exactly in the conventional way, but we got it done right up until the last present, her cell phone went dead. It still turned out good. She knew what she wanted to get her family and I shopped online at local stores telling her what I was looking at. I'm still neutropenic, that is the word I have probably misspelled many times, lol. I'm not sure since I left the hospital how mine is right now, but I will assume since I feel better, better. I can write this now since Denise has already got it, but that is the way I got her present. It wasn't the exact watch I was looking at, but it was one of the two. Me and Annie worked like that yesterday as a team to get Denise's and Beulah's, plus the new filter for the humidifier. It, in spite of the slight difference on 1 item worked so well that me and Denise done it that way.
My hat's off to Denise. She has done everything and has done it so great. She is reading this right now and said she didn't see me in that car today, where'd the we come from, lol. Then again... it was my brainstorm to do it like this, lol.
One thing I didn't put yesterday was that I tried some of the Blue Emu oil throughout the day. It lasts longer, burns about the same on the application, yet I don't know if it heals the same. We are low on the radiation creme and I think the only place to get it is at the radiologist's office, so I thought it worth a try. I had read some pretty good comments on a throat radiation board about it and a couple of other things. When my bath is done tonight Denise will clean and dress my throat with the radiation creme. I'm a bit worried still about it being ready by Monday but it seems to be healing fast, just hope it is fast enough.
No Morphine so far today, the pain patch have kept it under control. Before the bath though I'll take a 15 mg and by the time I'm done it should have kicked in. That is less than 1/2 we used at the hospital and while the healing is responsible mostly for the drop, there is still a lot of pain associated with the treatment. I don't like the effects at 15 and definitely don't at a higher dose, I can take the 10-15 minutes of pain better. Plus with higher dose I get those blank moments or crazy thoughts and moments, even afterward not knowing what I said or was saying in the middle of a sentence. I call them brain farts, lol.
I woke up and kept my 197 lbs! No loss last night. Today I have ate 4 sugar cookies, 2 Ensures, and I'm on my 4th Coke. I also ate 1/2 Pimento sandwich and 1/2 a Chicken Salad sandwich. If I can stay awake I'll add to that so maybe I can slowly turn this stuff around. The hardest thing to do is drink the Coke, I hate then taste of soft drinks. I know that can't last though as with 17-18 more treatments left my throat will become too raw again. My preference these days is water and some tea.
Last few day a weird thing that is getting more frequent is taking place. I get those fast, out of nowhere tired spells. I couldn't fight them off for a long time but as chemo went farther away I could, and still can. Now a strange muscle jerk occurs usually in my arms, hands, feet, or neck. The longer I fight the fatigue the worse they get and I kinda like dose off for a second, maybe zone out is a better term. I've decided to lay still and not fight them too much. It isn't painful... just weird. I could have probably gotten more eaten today if I could stay awake. If the fatigue hits with a chill, when I lay down I go back out like a light and unless I do one of those muscle jerks, I'm asleep. One of my cousins came to visit and one of my friends and both times I was out of it. Such a pretty day too, not that I could do anything, it's just nice to look out. I've spoken with both BB and Andy and they understood. Thanks guys.
I'll probably blog tomorrow since I can't be around everybody. It sounds kind of sad in a way because it is one of the few times we get together. Then again... it could have been worse. Maybe next year. All thosen who are reading this. I wish you a Merry Christmas.
Wednesday, December 23, 2009
12-23- Wednesday
The humidified stopped up sometime last night and when I awoke this morning, my neck was stiff from the dryness and extremely painful. The first thing I done was head and take 25 mg Morphine. It seemed like forever that it took the stuff to kick in.
My body looks kind of reptilian from all the scabs formed where my body is healing from the effects of the Taxotere. Little pain that i can tell from it, some of it still burns a bit and some of it itches. At least it's healing. The swelling in my fingers has almost went away, instead of being red, more pinkish now.
I was eating a Hardees Crispy Chicken and broke a tooth that had decay under the crown. It hasn't broken off completely yet primarily because I haven't eaten anything. I tried an Omelet Denise fixed and while it was soft, the crown still rocks. I'm not sure if it had a root canal or not, I'm guessing not though since I can feel a small portion of discomfort. After I weighed, I'm now down to 197 lbs, so not eating is not an option. I called my dentist office and they are closed until Jan 4th. I talked with mom and she is going to call her dentist tomorrow and see if he is open. The inevitable breaking off made me ask my cousin and brother how they felt when theirs broke off and what they did. While Bill felt no pain when his teeth broke off, Mark was in extreme pain. Mark said that he covered his in sugarless gum until he could get to the dentist to keep air from getting to the exposed nerve. that lead me to search a bit and read and keeping the nerve from air, extreme hot, or extreme cold will cease of at least lessen the pain. Denise went to the store and bought some temporary dental filling for me and that will be my form of sugarless gum. I did notice that my gums are shot. Even the bridges seem loose.
I tried and can once again drink Coke, still haven't tried Dr Pepper. I just can't forget the horrible taste. I'll bet that is a statement nobody thought they would ever hear me say, lol. I think I'll just go back to Tea. Ensure has a good flavor but the sodium or something in it still burns my throat, plus it thickens my mucus secretions.
Bowel movement have once again returned, maybe even a bit loose. I don't know what kind of pain medicine is in this patch I wear but even with the Morphine as needed doesn't seem to cause me constipation. Nothing like the Lortab or Endocet did.
Today was a stressful day. Long unrelated sort in itself. I will say this though. If you are reading this blog and have a loved one going through this or an employee, be as stress-less as possible. Many things that once were important just aren't, especially about work. Not being able to do anything to help or hearing what may seem like important pertaining to office happenings and not being able to do anything about it don't help. Somehow taking a chance to run in and do a task that can be done or should be or could be done by someone else and risking infection, no matter how much money is involved, is just... well, let's leave it at that.
I weighed in tonight at 197. I'd say that if I go much lower it will be feeding tube time. Denise says my muscles in my arms and legs are gone and my face looks shrunken in. What I have lost is some fat but mostly muscle. If I can I would like to get back to 200 lbs and hold there until this is over. I am weak outside and I'd say much more stress and I'll be weak inside. Days like today make me doubt what I will make it through it.
On the bright side... another good, long, hot, soaking bath. Plus I was able to get two people presents and a camper shell for my truck bought. Thanks to Annie and Bill for their help.
My body looks kind of reptilian from all the scabs formed where my body is healing from the effects of the Taxotere. Little pain that i can tell from it, some of it still burns a bit and some of it itches. At least it's healing. The swelling in my fingers has almost went away, instead of being red, more pinkish now.
I was eating a Hardees Crispy Chicken and broke a tooth that had decay under the crown. It hasn't broken off completely yet primarily because I haven't eaten anything. I tried an Omelet Denise fixed and while it was soft, the crown still rocks. I'm not sure if it had a root canal or not, I'm guessing not though since I can feel a small portion of discomfort. After I weighed, I'm now down to 197 lbs, so not eating is not an option. I called my dentist office and they are closed until Jan 4th. I talked with mom and she is going to call her dentist tomorrow and see if he is open. The inevitable breaking off made me ask my cousin and brother how they felt when theirs broke off and what they did. While Bill felt no pain when his teeth broke off, Mark was in extreme pain. Mark said that he covered his in sugarless gum until he could get to the dentist to keep air from getting to the exposed nerve. that lead me to search a bit and read and keeping the nerve from air, extreme hot, or extreme cold will cease of at least lessen the pain. Denise went to the store and bought some temporary dental filling for me and that will be my form of sugarless gum. I did notice that my gums are shot. Even the bridges seem loose.
I tried and can once again drink Coke, still haven't tried Dr Pepper. I just can't forget the horrible taste. I'll bet that is a statement nobody thought they would ever hear me say, lol. I think I'll just go back to Tea. Ensure has a good flavor but the sodium or something in it still burns my throat, plus it thickens my mucus secretions.
Bowel movement have once again returned, maybe even a bit loose. I don't know what kind of pain medicine is in this patch I wear but even with the Morphine as needed doesn't seem to cause me constipation. Nothing like the Lortab or Endocet did.
Today was a stressful day. Long unrelated sort in itself. I will say this though. If you are reading this blog and have a loved one going through this or an employee, be as stress-less as possible. Many things that once were important just aren't, especially about work. Not being able to do anything to help or hearing what may seem like important pertaining to office happenings and not being able to do anything about it don't help. Somehow taking a chance to run in and do a task that can be done or should be or could be done by someone else and risking infection, no matter how much money is involved, is just... well, let's leave it at that.
I weighed in tonight at 197. I'd say that if I go much lower it will be feeding tube time. Denise says my muscles in my arms and legs are gone and my face looks shrunken in. What I have lost is some fat but mostly muscle. If I can I would like to get back to 200 lbs and hold there until this is over. I am weak outside and I'd say much more stress and I'll be weak inside. Days like today make me doubt what I will make it through it.
On the bright side... another good, long, hot, soaking bath. Plus I was able to get two people presents and a camper shell for my truck bought. Thanks to Annie and Bill for their help.
Tuesday, December 22, 2009
Tuesday Follow-up
It's been a pretty decent day. ok... it has been great! I did learn another lesson though. For the first time in a while I filled the whirlpool tub up (left it turned off) and soaked. I soaked my neck as well. It felt sooooo goood. During the course of the day though I had decided that I was cutting back to the bare minimum on the Morphine, so it was pretty much out of my system. Now it is already past time (hour wise) to change the 3 day pain patch... forgot that too. When I got out and dried off I blotched my neck and put my PJs on. Went strolling through the house to see when Denise could clean and dress my neck, still feeling good but a breach of pain was slowly beginning to form as my neck got drier. So I use the liquid Morphine as the pain sped up. She is getting the stuff out and all the sudden it was like my neck blew into flames.
Even the sterile water/hydrogen peroxide soaked Gauze sponges burnt but brought a little relief.The didn't stop the pain but at least kept it from climbing, if indeed it could have climbed higher. The Radiation Lotion hurts when you put it on. For me, worse case scenario or best, the prepping is indeed painful but only precludes the real pain about to start when the lotion is applied. It can be one of the most painful things you will ever experience, and I've seen my share of pain. Heart attack, Gall Bladder stones, Shoulder surgery, Pancreastitus (can't spell that word). This rates right up there with the best.
Tonight I wonder. We start back Monday, how will I be able to go lotion free? Best I remember, you have to do this without lotion or it amplifies the effect. I am praying that it heals quicker and quicker each day. Denise wanted until after New Years but when Dr Green and I sat down the date on the 28th, we're expecting miracles, and so far God has bestowed plenty of them on us, so I have faith that another one is coming.
The Morphine has set in, the moisturizer effect of the lotion has taken effect, the new patch placed on, pain is barely there. My body is kinda rough feeling s the damage scabs over from the chemo. My arms and legs are quickly healing and apparently my back. I'm not sure if it will leave scars but I don't think I even had a modeling deal, lol. Well it's almost bedtime and despite a couple of bumps, it has been a great day. Bumps are ok, they teach us to enjoy the smooth pavement when it gets here.
Even the sterile water/hydrogen peroxide soaked Gauze sponges burnt but brought a little relief.The didn't stop the pain but at least kept it from climbing, if indeed it could have climbed higher. The Radiation Lotion hurts when you put it on. For me, worse case scenario or best, the prepping is indeed painful but only precludes the real pain about to start when the lotion is applied. It can be one of the most painful things you will ever experience, and I've seen my share of pain. Heart attack, Gall Bladder stones, Shoulder surgery, Pancreastitus (can't spell that word). This rates right up there with the best.
Tonight I wonder. We start back Monday, how will I be able to go lotion free? Best I remember, you have to do this without lotion or it amplifies the effect. I am praying that it heals quicker and quicker each day. Denise wanted until after New Years but when Dr Green and I sat down the date on the 28th, we're expecting miracles, and so far God has bestowed plenty of them on us, so I have faith that another one is coming.
The Morphine has set in, the moisturizer effect of the lotion has taken effect, the new patch placed on, pain is barely there. My body is kinda rough feeling s the damage scabs over from the chemo. My arms and legs are quickly healing and apparently my back. I'm not sure if it will leave scars but I don't think I even had a modeling deal, lol. Well it's almost bedtime and despite a couple of bumps, it has been a great day. Bumps are ok, they teach us to enjoy the smooth pavement when it gets here.
Tuesday 22nd
I slept pretty decent last night awaking only about 3 times briefly. I finally stayed awake about 6:30 and watched Denise as she went up the driveway to work. I had Annie get breakfast at Hardees. I paid, she went and got it, I think a good arrangement.
I know I've still a ways to go but we've made it this far, maybe it will get easier. I looked over my pills this morning and after a discussion with Denise last night, I've decided to leave off my blood pressure medicines. There were a couple of times at the hospital where I was drifting in and out, Denise and Charlie thought I was fighting sleep and I wasn't for sure what was happening. I'll be sitting or laying, maybe even standing, and all the sudden this blank feeling came over me and I was so tired I couldn't hold my eyes open yet when I close them to sleep, I became awake. It was like the switch to shut down was turned off then on again. Anyway, there were a few times where I got lucky and the nurse would come in to take my blood pressure and one of these episodes occurred. one time my blood pressure was 77 over 57 (or something like that). Once the top number was 87. There were a couple of other times I believe, but I don't remember the numbers. The nurse preforming the check would say that something didn't read right and recheck. As long as the episode wasn't in place, I read a perfect reading, or at last close to perfect. I think this Morphine must be, for whatever reason, causing these on/off switches.
Now if they are a long episode or a series of them strung together, I have no idea what I write and usually say. Like last night Denise asked me who cleaned and dressed my wounds the night she didn't stay. I told her I did by myself. She asked how and as I was explaining it to her I started one. Now I am laying there with my eyes closed like I usually do from the intense pain as she reapplies the radiation lotion and it goes from the normal darkness to looking as if I opened my eyes and was watching 3 guys on a white beach with a beautiful beach house in the background. White shears gentle blowing from the ocean breeze on the porch. One guy is watching the other two, standing between them and slightly back from them. The other two guys are making beautiful circles in the sand, making sure they are formed perfectly. My conversation fluently rolled straight into reflections what I thought they were doing. "We got all the white stuff off when we did it but the hardest thing was knowing where to start the circles because we weren't sure where they were." Denise said, " What in the Hell are you talking about?" Poof, back to reality I went and I said, "nothing". She kept asking what I was talking about and I finally resolved at telling the truth.
I was going to write about some of the side effects I've noticed. Morphine seems to have several. I've been up and down all morning. Not sure if they are related, but they seem to have developed at the same time. Like a twitch or a muscle jerk. I'll be sitting holding something, like the mouse for instance. Suddenly it's like I black out, usually one of my arms or hands jerk, something it may be other body parts. Then I am right back awake and alert. That may happen once of many times throughout the day. It is for that reason I have decided to quit driving until this is over. It only takes a second of blackout and a jerk to lose control of you've wrecked. It is a very real possibility. I'm hoping and praying that the pain level will go down enough to where the patch is the only thing I need.
Keeping a train of thought is extremely hard to do. My lips stay numb. It may be from the severe chemo reaction. Who knows. the last 2 fingers of my left hand are numb. Shortness of breath. Whatever this is I just pray that it isn't permanent.
I've ate a little both meals today but overall not really what would be considered enough. The food still tastes funny or bad, nothing really appealing. I looked and I am as of tomorrow 2 weeks out from the last Chemo so that should change little by little. That's part of the attractiveness of chemo, lol. I weighed myself last night and I am at the level I desired and prepared for, 200 lbs. I'll get worried if it gets below 195. With 17-18 more radiation treatments to go, it ain't lookin' so good. Plus i've got it a tad bit warm in my room, I'm sweating and so has everybody else who has come in here.
We spoke with a friend that is a P.A. about the blood pressure medicine and me skipping it and Deb says she thinks that it is a good idea. That was something I had thought about while I was on vacation after seeing the numbers while my vitals were being checked. I am having to drink more water without the IV fluids. I didn't realize just how helpful these things are. I would definitely recommend to anybody who does chemo to go back to the doctor or nurses at their chemo hut and ask for seconds if they feel like they need it. Dr Panella, Ruth, and all the ladies at the chemo hut kept telling me just to ask. I went back after throwing up and got more IV medicine to combat that, later just to rehydrate. I'm not sure if all Oncologists offer this, but Panella and the others at UT Cancer Center do. One has to remember that they are here to help and while I never trust usually, I trust them and the fact that they have my best interest at heart.
More later on. So far, so good.
I know I've still a ways to go but we've made it this far, maybe it will get easier. I looked over my pills this morning and after a discussion with Denise last night, I've decided to leave off my blood pressure medicines. There were a couple of times at the hospital where I was drifting in and out, Denise and Charlie thought I was fighting sleep and I wasn't for sure what was happening. I'll be sitting or laying, maybe even standing, and all the sudden this blank feeling came over me and I was so tired I couldn't hold my eyes open yet when I close them to sleep, I became awake. It was like the switch to shut down was turned off then on again. Anyway, there were a few times where I got lucky and the nurse would come in to take my blood pressure and one of these episodes occurred. one time my blood pressure was 77 over 57 (or something like that). Once the top number was 87. There were a couple of other times I believe, but I don't remember the numbers. The nurse preforming the check would say that something didn't read right and recheck. As long as the episode wasn't in place, I read a perfect reading, or at last close to perfect. I think this Morphine must be, for whatever reason, causing these on/off switches.
Now if they are a long episode or a series of them strung together, I have no idea what I write and usually say. Like last night Denise asked me who cleaned and dressed my wounds the night she didn't stay. I told her I did by myself. She asked how and as I was explaining it to her I started one. Now I am laying there with my eyes closed like I usually do from the intense pain as she reapplies the radiation lotion and it goes from the normal darkness to looking as if I opened my eyes and was watching 3 guys on a white beach with a beautiful beach house in the background. White shears gentle blowing from the ocean breeze on the porch. One guy is watching the other two, standing between them and slightly back from them. The other two guys are making beautiful circles in the sand, making sure they are formed perfectly. My conversation fluently rolled straight into reflections what I thought they were doing. "We got all the white stuff off when we did it but the hardest thing was knowing where to start the circles because we weren't sure where they were." Denise said, " What in the Hell are you talking about?" Poof, back to reality I went and I said, "nothing". She kept asking what I was talking about and I finally resolved at telling the truth.
I was going to write about some of the side effects I've noticed. Morphine seems to have several. I've been up and down all morning. Not sure if they are related, but they seem to have developed at the same time. Like a twitch or a muscle jerk. I'll be sitting holding something, like the mouse for instance. Suddenly it's like I black out, usually one of my arms or hands jerk, something it may be other body parts. Then I am right back awake and alert. That may happen once of many times throughout the day. It is for that reason I have decided to quit driving until this is over. It only takes a second of blackout and a jerk to lose control of you've wrecked. It is a very real possibility. I'm hoping and praying that the pain level will go down enough to where the patch is the only thing I need.
Keeping a train of thought is extremely hard to do. My lips stay numb. It may be from the severe chemo reaction. Who knows. the last 2 fingers of my left hand are numb. Shortness of breath. Whatever this is I just pray that it isn't permanent.
I've ate a little both meals today but overall not really what would be considered enough. The food still tastes funny or bad, nothing really appealing. I looked and I am as of tomorrow 2 weeks out from the last Chemo so that should change little by little. That's part of the attractiveness of chemo, lol. I weighed myself last night and I am at the level I desired and prepared for, 200 lbs. I'll get worried if it gets below 195. With 17-18 more radiation treatments to go, it ain't lookin' so good. Plus i've got it a tad bit warm in my room, I'm sweating and so has everybody else who has come in here.
We spoke with a friend that is a P.A. about the blood pressure medicine and me skipping it and Deb says she thinks that it is a good idea. That was something I had thought about while I was on vacation after seeing the numbers while my vitals were being checked. I am having to drink more water without the IV fluids. I didn't realize just how helpful these things are. I would definitely recommend to anybody who does chemo to go back to the doctor or nurses at their chemo hut and ask for seconds if they feel like they need it. Dr Panella, Ruth, and all the ladies at the chemo hut kept telling me just to ask. I went back after throwing up and got more IV medicine to combat that, later just to rehydrate. I'm not sure if all Oncologists offer this, but Panella and the others at UT Cancer Center do. One has to remember that they are here to help and while I never trust usually, I trust them and the fact that they have my best interest at heart.
More later on. So far, so good.
Monday, December 21, 2009
Monday 21st - Evening
Well the clock ticked by and finally Panella came in. I tell you this is a busy man. Ever so often a nurse would knock and then as she saw the look on Charlie and my faces go from a big grin to a disappointing look, they began to get tickled. It pretty much became a joke to all of us. They knew we were excited thinking it was either Panella or Green and when we saw it wasn't, we'd drop the excitement. There was a good crew of nurses there again today. Ghost (think that's the name) movie with Patrick Swazyee and Demi Moore kept us a little more occupied. I was able to get another antibiotic we hadn't expect to get in and more fluids. Plus we ended up having some fun with oh no, just you again or surprise, it's just me. They really got a good crew there on the 12th floor. I hope you all have a Merry Christmas and hopefully not to see you again... unless we're shopping, lol. Seriously, thank you and Merry Christmas.
The lady who took me to Dr Green's did so in an unfamiliar approach. She wasn't sure which place I as going to and asked that I look at the rooms we passed by for familiarity. Suddenly we were in the midst of a hallway of the ladies I see at Radiology. I told her I know the ladies... this is home here. She left me and they put me in room C. In came Dr Green, looked me over and commented on the progress made, and the progress still lacked. Told me Merry Christmas and to be back Monday. Back to my room I went. They came in, gave me my medicines I requested when I got back, and pulled the INP from my arm.
I'm HOME!!! I love it. Charlie stayed with me and took the things to the truck and we came home. I was thinking morning and in reality we didn't pull into the driveway until 4:25pm, but I'm home none-the-less and I'm typing this on my home computer. We swung by the Honey Baked Place so he could get his order, then home we headed. Charlie dropped me off at the house and carried my stuff in and then took my prescriptions over to Minnis Drug to be filled, Denise will pick them up.
The lady who took me to Dr Green's did so in an unfamiliar approach. She wasn't sure which place I as going to and asked that I look at the rooms we passed by for familiarity. Suddenly we were in the midst of a hallway of the ladies I see at Radiology. I told her I know the ladies... this is home here. She left me and they put me in room C. In came Dr Green, looked me over and commented on the progress made, and the progress still lacked. Told me Merry Christmas and to be back Monday. Back to my room I went. They came in, gave me my medicines I requested when I got back, and pulled the INP from my arm.
I'm HOME!!! I love it. Charlie stayed with me and took the things to the truck and we came home. I was thinking morning and in reality we didn't pull into the driveway until 4:25pm, but I'm home none-the-less and I'm typing this on my home computer. We swung by the Honey Baked Place so he could get his order, then home we headed. Charlie dropped me off at the house and carried my stuff in and then took my prescriptions over to Minnis Drug to be filled, Denise will pick them up.
Monday 21st
I got up a little after 4am., I think Charlie was already up, lol, if not... he is now. My throat is all together, but that is normal. My blood pressure was perfect, temperature perfect, o/s perfect. The RN just left a bit ago and said my Neutafil (spelling) is 1.1 and the white blood cells is (Drum Roll Please) ........3.1. YEA!!!! That pretty much ensures that I get to go home.
A good sleep last night. Not a lot of sleep but what I got was quality sleep.I just can't wait too sleep in my own bed and eat my own munchies foods.That might be considered when working on people. We've had a changing of the shifts and the nurses seem nice. I had a lady from quality control visit. She was very nice but I couldn't help but wonder if she thought someone still having to stay here would actually complain knowing they aren't going anywhere.
Well, this is the third time I'm attempting this addition to todays' possible last post from the UT area.
A good sleep last night. Not a lot of sleep but what I got was quality sleep.I just can't wait too sleep in my own bed and eat my own munchies foods.That might be considered when working on people. We've had a changing of the shifts and the nurses seem nice. I had a lady from quality control visit. She was very nice but I couldn't help but wonder if she thought someone still having to stay here would actually complain knowing they aren't going anywhere.
Well, this is the third time I'm attempting this addition to todays' possible last post from the UT area.
Sunday, December 20, 2009
Still Sunday... Part 3
Like at the end of Part 2 said some of this stuff I have left off, it ain't even remotely pretty cool, and embarrassing. You might now have any worries, these are just mine. With the Morphine I have noticed some weird stuff. As a for instance, today while Denise was cleaning and dressing my throat, as ordered 50% Saline 50% Hydrogen Peroxide with 4 inch gauze strips, Maiderm lotion. Yep this is painful so I personally have a problem laying still and being in pain, especially if the pain is constantly being supplied. I'm not sure if I will let her then again, she may already have it up, a few minutes before my wife caught her and made her stop.
Now here I am off topic again, so lets get back to the topic, weird side effects. While she was applying the Radiation Lotion I began to move my hand as if I was holding a cleaning cloth and rubbing the bottom of the dash in a 1970-1981 Camaro. In my mind I was doing this. I was aware that I wasn't but soon realized that I wasn't just dreaming that I was doing it... poof, I was back to this world. I asked Denise if I was making the motion (same motion), which she confirmed. I told her what I thought I was doing.
The other morning, with the help yet another drug known for these actions, which I used frequently over the last several years with nothing bad happening, finally did. Denise said I awoke completely confused, and I remember being confused. I was scared and trying to pull the IV out, arguing, and while non violent, also crossed over the line and became violent. I was so embarrassed. I was aware yet unable to gain control for a while. After that, I turned down the pills.
These are only two instances and these are the worse so far. Others though are bad, like dry mouth.... and I mean DRY MOUTH, Sleepy and tired yet unable to sleep. Memory loss. Now here is biggie in the world of throats, liquid. The liquid will burn you up! I was given liquid from they said the doc a few times. I do believe that was Alcohol... actually a nurse confirned it.
There is more... but that will have to be another day.
Now here I am off topic again, so lets get back to the topic, weird side effects. While she was applying the Radiation Lotion I began to move my hand as if I was holding a cleaning cloth and rubbing the bottom of the dash in a 1970-1981 Camaro. In my mind I was doing this. I was aware that I wasn't but soon realized that I wasn't just dreaming that I was doing it... poof, I was back to this world. I asked Denise if I was making the motion (same motion), which she confirmed. I told her what I thought I was doing.
The other morning, with the help yet another drug known for these actions, which I used frequently over the last several years with nothing bad happening, finally did. Denise said I awoke completely confused, and I remember being confused. I was scared and trying to pull the IV out, arguing, and while non violent, also crossed over the line and became violent. I was so embarrassed. I was aware yet unable to gain control for a while. After that, I turned down the pills.
These are only two instances and these are the worse so far. Others though are bad, like dry mouth.... and I mean DRY MOUTH, Sleepy and tired yet unable to sleep. Memory loss. Now here is biggie in the world of throats, liquid. The liquid will burn you up! I was given liquid from they said the doc a few times. I do believe that was Alcohol... actually a nurse confirned it.
There is more... but that will have to be another day.
Sunday 20th Part 2
As promised... back again. Panella came through about 9:30am and checked. He said that my white cells are 2.2 but my NutraFill (?) haven't went up. Something about fighting off infections. There went the Sunroom visits. Supposely plants, fresh fruit, etc. Here is a good page from a search http://www.google.com/search?hl=en&client=firefox-a&rls=org.mozilla%3Aen-US%3Aofficial&hs=AQV&q=neutropenia+and+flowers&btnG=Search&aq=f&oq=&aqi=
The day has went well. Slooowww, but well. I get these extreme bouts of tired, but that is all. A minor headache. I have had these ( Scabs ?) that break loose from the insides of my throat. Each time they break-away, a sharp, fast pain hits. How long it stays depends upon what you are doing, have done, and what you do during the pain. Usually though it ends up turning out good. Like the large piece that came up today. It hurt bad but in the end , swallowing and especially swallowing something without it going up your nose.
Here is an example. I swallowed a large vitamin pill, well lubricated I might add. I done my usual cough, grunt, gag... severe times. The nurse watched with amazement. I guess I must have looked either crazy or like a lair. I mumbled to myself, inaudibly and embarrassed. well it didn't go to my lungs, but it don't feel like it went down the right way either. Ahhhh the sinus cavities. I then made a snorting sound and leaving a brown trail right down my tongue the large pill. That was a Kodak Moment. The look on her face. I don't think she had ever saw that before. She kind of started listening to me on pain meds. I would imagine being an RN she thought she had saw it all, guess that changed, lol.
Denise left and went home, they have a lot of patients to see tomorrow and Charlie came in replacement of Denise. Panella said home was a 95% possibility, I tried to get a time frane and the best I could get was between 9-12. Green is suppose to stop in and check and discuss the restart date. I really don't want to start back before Christmas... given the spots are a bit better healed. I know they don't wait until I'm completely healed but there is no reason that I can see in starting something that will have to be postponed. I could be wrong and would highly a reason to do it this way.
There is much, much more to tell but fatigue, extreme fatigue strikes me hard right now. I also need to tell about the side effects of the pain medication that I'm taking, this being one of them.
The day has went well. Slooowww, but well. I get these extreme bouts of tired, but that is all. A minor headache. I have had these ( Scabs ?) that break loose from the insides of my throat. Each time they break-away, a sharp, fast pain hits. How long it stays depends upon what you are doing, have done, and what you do during the pain. Usually though it ends up turning out good. Like the large piece that came up today. It hurt bad but in the end , swallowing and especially swallowing something without it going up your nose.
Here is an example. I swallowed a large vitamin pill, well lubricated I might add. I done my usual cough, grunt, gag... severe times. The nurse watched with amazement. I guess I must have looked either crazy or like a lair. I mumbled to myself, inaudibly and embarrassed. well it didn't go to my lungs, but it don't feel like it went down the right way either. Ahhhh the sinus cavities. I then made a snorting sound and leaving a brown trail right down my tongue the large pill. That was a Kodak Moment. The look on her face. I don't think she had ever saw that before. She kind of started listening to me on pain meds. I would imagine being an RN she thought she had saw it all, guess that changed, lol.
Denise left and went home, they have a lot of patients to see tomorrow and Charlie came in replacement of Denise. Panella said home was a 95% possibility, I tried to get a time frane and the best I could get was between 9-12. Green is suppose to stop in and check and discuss the restart date. I really don't want to start back before Christmas... given the spots are a bit better healed. I know they don't wait until I'm completely healed but there is no reason that I can see in starting something that will have to be postponed. I could be wrong and would highly a reason to do it this way.
There is much, much more to tell but fatigue, extreme fatigue strikes me hard right now. I also need to tell about the side effects of the pain medication that I'm taking, this being one of them.
Saturday, December 19, 2009
Sunday 20th Part 1
Oh what a night, It's 2:30am and I awake once again tonight in pain. I mouth breathe in my sleep. I had some more Morphine at 12:30, and it did work, but only so much. I ended up giving in and using the Linocaine to numb... but it, like the pain meds, only go so far. At least I have web and TV. At home I seldom watch TV, but in this small penthouse suite (lol), funny what one will do.
We do have an humidifier running now. I don't have any of the junk food here I have at home though. I need to go home.
Will Add More Later
We do have an humidifier running now. I don't have any of the junk food here I have at home though. I need to go home.
Will Add More Later
Sat 19th- End Of Day
It's been a very busy day today. Mom and Charlie came by then mom and day, Misty & Matt, Megan, Richard & Missy, and the grand-kids. All in all pretty busy day. The company was nice. The grand-kids weren't allowed up on this floor or in the room, but Josh and Brandon were insistent. The let them come up but they weren't allow to touch anything or come too close. I figured high five's didn't count, lol. Mom and dad stayed in the room and had Denise or I knew they were coming that fast we'd have waited long on the pain meds. I have to hit the premium time after taking the Morphine so that I can get the fullest effect. That ended up being done in front of them, wich I hated to do, Megan was also in here. Ended up dad tried to make small talk, I guess to take my mind off of it, mom never said a word, while I heard Denise snap at Megan no! She filmed it, lol.
By the time the treatment was over mom left to go send Matt and Misty up... Misty said mom cried. I viewed the video that Megan done while Denise addressed my wounds, it is bad. I'm still at odds as to Megan putting it up or not.
Misty had Megan take this picture of me and her. This is my oldest daughter. Pretty good picture, eh? Looking at this picture tonight made me realize that if it all ended tomorrow, I at least done 3 things right in my life and have had many blessings bestowed upon me... this being one of them.
We have excellent nurses again this night, hopefully my last one. I declined the sleeping pill after awaking in a freaked out state this morning. I don't understand a lot of this, but the one thing I do is something that I have always understood, moderation.I am going to attempt to talk with Panella about this internal swelling of my throat.http://lightnight99.blogspot.com/2009_12_01_archive.html
By the time the treatment was over mom left to go send Matt and Misty up... Misty said mom cried. I viewed the video that Megan done while Denise addressed my wounds, it is bad. I'm still at odds as to Megan putting it up or not.
Misty had Megan take this picture of me and her. This is my oldest daughter. Pretty good picture, eh? Looking at this picture tonight made me realize that if it all ended tomorrow, I at least done 3 things right in my life and have had many blessings bestowed upon me... this being one of them.
We have excellent nurses again this night, hopefully my last one. I declined the sleeping pill after awaking in a freaked out state this morning. I don't understand a lot of this, but the one thing I do is something that I have always understood, moderation.I am going to attempt to talk with Panella about this internal swelling of my throat.http://lightnight99.blogspot.com/2009_12_01_archive.html
Saturday... 19th morning
Well, we're still here. This morning Panella stopped in and said while progress was being made, we are a ways yet, but maybe tomorrow. I stayed up late last night so that Denise could get some much needed sleep, she doesn't get worrying about my mouth breathing.
Mom and Charlie stopped in and brought a humidifier and some stuff we needed from home that didn't get here due to the snow yesterday. The got to see first hand the intense pain cleaning and dressing the wounds cause. The nurse is going to check on something to numb the outside of my throat while the wounds are being addressed. By gollies would that ever be great.
So far, once while eating and once while taking liquid meds, I've gotten choked severely that have produced small pieces of meat that rots and breaks away. Much like the outside only even more painful. Panella said that Green would not wait until it completely heals before restarting. While I kinda know that, I'll be damned if I will let him start before I am ready. This is still my body and I am still in charge of it.
Well that is today as of 2pm and where we stand. My rant for today, lol. We've got a good nurse again... thank God.
Mom and Charlie stopped in and brought a humidifier and some stuff we needed from home that didn't get here due to the snow yesterday. The got to see first hand the intense pain cleaning and dressing the wounds cause. The nurse is going to check on something to numb the outside of my throat while the wounds are being addressed. By gollies would that ever be great.
So far, once while eating and once while taking liquid meds, I've gotten choked severely that have produced small pieces of meat that rots and breaks away. Much like the outside only even more painful. Panella said that Green would not wait until it completely heals before restarting. While I kinda know that, I'll be damned if I will let him start before I am ready. This is still my body and I am still in charge of it.
Well that is today as of 2pm and where we stand. My rant for today, lol. We've got a good nurse again... thank God.
Friday, December 18, 2009
Dec 18th, Part 2
Part 2 -
It has been a weird day... very weird. Green came by and sat on the bed and chatted for a while. We discussed the treatment and some of the sour outcomes so far that we're trying to heal from. We briefly discussed the continuation of the treatment. Green wants me to call his office on Tuesday. I talked with him about the crazy but sweet RN that seems to vanish when called. I told him I had waited 4 hours on pain meds and acid reflux pills. How I had rung into the station 5-6 times for my IV machine to be reset before finally giving up, putting on my shoes and jacket, grab my IV machine and went to them. A lady that attended us briefly between shift changes saw me, fix it, and said she'd get my meds. Within 10 minutes, it was all done correctly.
Later on, Panella came by and said that my white blood cells was up to 1.01... we're making some improvements. He said maybe tomorrow... but probably not. I went over the events with the nurse that could have played a part in the movie, "Misery". I'm not sure just how much Panella listened to, but it didn't matter. After my chat with Green, we had another nurse that was good. I think it even shocked her after she stepped into the corner and stepped where it was sticky. It was about 1/2 of a bag of antibiotics she let run out. 4 hours for a acid reflux pill and pain pills?
I did explain that I didn't want to be here and could do better at home. I am on the laptop so we will not get detailed until I get home on a computer. I also have a close-up picture of my throat so that when I write about Denise cleaning my wound, you will see what I am talking about. I'm not sure how much farther I will go. This has become a mess, I have become a mess. I talked on my cell phone and on the hospital phone tonight and it wasn't until Denise handed me back the cell and she told me it was gross and needed cleaning did I see all the skin pieces plastered on the phones.
We've been cleaning the wounds since I've been here. I think the nurses were suppoae to do it but after nobody offered, Denise said if they would bring the supplies that she would. Within 15 minutes... supplies! You have to use a 50/50 mixture of saline and hydrogen peroxide and bandage strips. You lay the now soaked (we used 4 inch strips) of a gauze like stuff on the injured part. We do this in a 2 stage, 1 for front and side, the other part for the back and side, mine is a full circle. Be prepared. The more you do this the worse it hurts so pray you don't get a nurse that screws up your pain meds like I did. This we repeat until I can't stand it of about 2-3 times. Then you pat dry, removing dead burnt skin, believe me... it will go layers. Anyway, you then apply the lotion your doctor has approved or one that worked for someone you know. Yep, you are about to break those Pearlie Whites again out of pain, lol. Eventually the lotion will ease the pain in in just a few hours, you are ready to do it again. You do this until either you run outta skin, or outta dead skin.
Please note caregiver. The lesions, burns, and blisters are but a mere reflection of what the inside looks like. Actually the inside is worse I'm told... and I'd have to agree. It is not going to be easy for the victim no matter how much you try, but you can make it as painless as possible. Also please note that there is no reward for getting done faster. When the skin just sloughs off, it will wait for you to come and get it. The again, it may await a phone to attach itself too, lol. Like mine did.
The white places are dead skin and meat that just keep sloughing off. It's not the nest pic in the world but not bad for a cell phone either. Remember, the outside shows only a portion of what the inside looks like.
I have a fever of 101.3 tonight again. The nurse went to get a Tylenol pill, hopefully it will not be a repeat of this morning.
It has been a weird day... very weird. Green came by and sat on the bed and chatted for a while. We discussed the treatment and some of the sour outcomes so far that we're trying to heal from. We briefly discussed the continuation of the treatment. Green wants me to call his office on Tuesday. I talked with him about the crazy but sweet RN that seems to vanish when called. I told him I had waited 4 hours on pain meds and acid reflux pills. How I had rung into the station 5-6 times for my IV machine to be reset before finally giving up, putting on my shoes and jacket, grab my IV machine and went to them. A lady that attended us briefly between shift changes saw me, fix it, and said she'd get my meds. Within 10 minutes, it was all done correctly.
Later on, Panella came by and said that my white blood cells was up to 1.01... we're making some improvements. He said maybe tomorrow... but probably not. I went over the events with the nurse that could have played a part in the movie, "Misery". I'm not sure just how much Panella listened to, but it didn't matter. After my chat with Green, we had another nurse that was good. I think it even shocked her after she stepped into the corner and stepped where it was sticky. It was about 1/2 of a bag of antibiotics she let run out. 4 hours for a acid reflux pill and pain pills?
I did explain that I didn't want to be here and could do better at home. I am on the laptop so we will not get detailed until I get home on a computer. I also have a close-up picture of my throat so that when I write about Denise cleaning my wound, you will see what I am talking about. I'm not sure how much farther I will go. This has become a mess, I have become a mess. I talked on my cell phone and on the hospital phone tonight and it wasn't until Denise handed me back the cell and she told me it was gross and needed cleaning did I see all the skin pieces plastered on the phones.
We've been cleaning the wounds since I've been here. I think the nurses were suppoae to do it but after nobody offered, Denise said if they would bring the supplies that she would. Within 15 minutes... supplies! You have to use a 50/50 mixture of saline and hydrogen peroxide and bandage strips. You lay the now soaked (we used 4 inch strips) of a gauze like stuff on the injured part. We do this in a 2 stage, 1 for front and side, the other part for the back and side, mine is a full circle. Be prepared. The more you do this the worse it hurts so pray you don't get a nurse that screws up your pain meds like I did. This we repeat until I can't stand it of about 2-3 times. Then you pat dry, removing dead burnt skin, believe me... it will go layers. Anyway, you then apply the lotion your doctor has approved or one that worked for someone you know. Yep, you are about to break those Pearlie Whites again out of pain, lol. Eventually the lotion will ease the pain in in just a few hours, you are ready to do it again. You do this until either you run outta skin, or outta dead skin.
Please note caregiver. The lesions, burns, and blisters are but a mere reflection of what the inside looks like. Actually the inside is worse I'm told... and I'd have to agree. It is not going to be easy for the victim no matter how much you try, but you can make it as painless as possible. Also please note that there is no reward for getting done faster. When the skin just sloughs off, it will wait for you to come and get it. The again, it may await a phone to attach itself too, lol. Like mine did.
The white places are dead skin and meat that just keep sloughing off. It's not the nest pic in the world but not bad for a cell phone either. Remember, the outside shows only a portion of what the inside looks like.
I have a fever of 101.3 tonight again. The nurse went to get a Tylenol pill, hopefully it will not be a repeat of this morning.
Dec 18th, - Another Day
Rough night last night. I mouth breathed and Denise would wake me up so I could stop, but it still done damage. I spit up blood on and off again. My O2 stats were low again so I wore Oxygen all night and suppose to have it on now. I kept a low grade temperature all night and took Tylenol.
I'm getting worried, acid reflux is a big no-no. It's almost 9:30 and we've asked a few times... still no meds. But they don't want me bringing my own? Luckily I don't need my blood pressure meds, my blood pressure has stayed low, not sure what that is a sign of. Couldn't eat this morning, too sore, but the food looked good.
Called yet again for my acid reflux meds... still nothing. I sent Denise after some over the counter ones. She was afraid they would kick me out but hey, making me worse off isn't helping. She thought the same thing when I stopped the radiation, now they are glad I did.
The nurses last night... on th spot. So much differnt than today's, save one.
I'm getting worried, acid reflux is a big no-no. It's almost 9:30 and we've asked a few times... still no meds. But they don't want me bringing my own? Luckily I don't need my blood pressure meds, my blood pressure has stayed low, not sure what that is a sign of. Couldn't eat this morning, too sore, but the food looked good.
Called yet again for my acid reflux meds... still nothing. I sent Denise after some over the counter ones. She was afraid they would kick me out but hey, making me worse off isn't helping. She thought the same thing when I stopped the radiation, now they are glad I did.
The nurses last night... on th spot. So much differnt than today's, save one.
Thursday, December 17, 2009
Dec 17th follow-up
Well, by the time we get here my temperature was 103.5 DF. They admitted me and that is where I write from now... the Penthouse, lol. Last Room on the very top (12th story)..It would appear that I will be out at the earliest, Saturday or Sunday... but that at change as I am still running on and off temperature.
My white cells .09 and should be 4.8-10.6... not too good. They have brought and left this sutff to clean and care for my neck radiation burns, which are severe.
I doubt that I will be checking email tonight and am tired. I mouth breathe when I sleep and that wakes me with pain and bleeding. I considered taking Morphine on top of the patch but I really the pain to awaken me.
The staff here at UT are nothing short of excellent. The food ain't 1/2 bad either, lol. Dr Panella is also checking my urine and blood work and has has ordered more X-Rays of my chest. They have added Oxygen because my O2 stats are down.
I tricked Denise into eating.. I told her I was hungry (they are wanting me to gain weight) and so downstairs she went. I kinda stumbled around on what I might eat, but for her to use her own opinion. She came back with stuff she liked and I should be able to eat. Told her I couldn't and hate to see it wasted... so she ate it. She needed that.
A lady down the hallway just coded tonight. They were working on her when Denise came back in. The guy who came to get me for the chest X-Ray brought a stretcher, which I thought weird at first. I think this floor is the one where very, very sick people come. Advanced cancer, compromised immunity-- stuff like that. That explains the stretcher. I guess me being able to walk, but he wouldn't let me, rules.
My white cells .09 and should be 4.8-10.6... not too good. They have brought and left this sutff to clean and care for my neck radiation burns, which are severe.
I doubt that I will be checking email tonight and am tired. I mouth breathe when I sleep and that wakes me with pain and bleeding. I considered taking Morphine on top of the patch but I really the pain to awaken me.
The staff here at UT are nothing short of excellent. The food ain't 1/2 bad either, lol. Dr Panella is also checking my urine and blood work and has has ordered more X-Rays of my chest. They have added Oxygen because my O2 stats are down.
I tricked Denise into eating.. I told her I was hungry (they are wanting me to gain weight) and so downstairs she went. I kinda stumbled around on what I might eat, but for her to use her own opinion. She came back with stuff she liked and I should be able to eat. Told her I couldn't and hate to see it wasted... so she ate it. She needed that.
A lady down the hallway just coded tonight. They were working on her when Denise came back in. The guy who came to get me for the chest X-Ray brought a stretcher, which I thought weird at first. I think this floor is the one where very, very sick people come. Advanced cancer, compromised immunity-- stuff like that. That explains the stretcher. I guess me being able to walk, but he wouldn't let me, rules.
December 17th 5:00 am
I awoke to the usual pain, maybe decreased a bit and more just a soreness than pain. Automatically I (usual) pulled up through my sinus and throat a mouthful of what felt like phlegm, so I spit into an empty water bottle designated just for that. This time though instead of the regular color it was mostly blood. I ended up spitting up about 3 more mouthfuls of blood and phlegm, then it went back clear. It was a pinkish color. Now it is a mixture. The patch for pain should be kicked in by now but I've never used one before so I no way of knowing how much pain is being blocked. I am a little dizzy and my voice is gone. It's now 5:17, I woke up maybe about 25 minutes ago. STRANGE.
5:22- checking for temperature now. It is 101 but I drank som3e cold water so I have to retake.
5:40 - retake It is now 5:44. Right at 102 D F.
Dr Panella called back and we have to be to the lab this morning and check for cultures growing. He said I may have to be admitted. I am either hungry or sick at my stomach, not sure which, plus I'm freezing. It's now 6:43 am.
5:22- checking for temperature now. It is 101 but I drank som3e cold water so I have to retake.
5:40 - retake It is now 5:44. Right at 102 D F.
Dr Panella called back and we have to be to the lab this morning and check for cultures growing. He said I may have to be admitted. I am either hungry or sick at my stomach, not sure which, plus I'm freezing. It's now 6:43 am.
Wednesday, December 16, 2009
December 16th
Another sleepless night. I may have gotten 3 hours or so all together. I asked Denise this morning if she would call and talk with Ruth at Dr Panella's office since my voice is all but gone. Meanwhile Charlie came back here to check on me and brought me a biscuit/gravy from Hardees, I could only get a few bites before the pain and choking got too bad to continue. Denise finally got a hold of Ruth who said to come on down to the Chemo Hut and they would give me fluids and meds. Charlie was going to take me but Denise insisted on taking me so they could get this thing figured out. A big thank you goes out to Dr Ramaprasad (Rama) and Kathy at Morristown Heart Consultants where Denise works. They have been the kind, caring, and helpful in letting Denise take off and take care of me.
We get down there and they took me right on back. I've never seen it that full. Then again, usually I'm out of it most of the time, lol. They checked me out and I think even they were surprised to see what it looked like. we sat down by a lady and chatted for a while, she has advanced lung cancer and one lung has collapsed, but they are shrinking the tumor. She asked what happened to my throat and I told her Radiation. She immediately freaked out and said they wanted her to do radiation but after seeing what I looked like, decided not to do it. I and Denise both told her that hers would probably go easier and better, that head & neck radiation was suppose to be the worse one. I'm not sure we changed her mind though. She was terrified from the sight of my throat.
We were down there a little over 5 hours. 2 bags of fluids (saline), Benedryl, an Antibiotic, and Morphine. There may have been other stuff but I'm not sure. I got a few winks after a while and Denise would wake me whenever I started gurgling sounds so I could spit it up. The lack of gag reflexes and I think an infection starting is making it worse. I would have awaken anyway like I did all night, usually in extreme pain and choking. Denise kept the lotion applied to my throat which helped. I also want to thank Ruth, Panella, and all the ladies at the Chemo Hut. I would recommend them to anybody going through this. They are just great there and I have never seen anybody work as hard as these ladies do. That is saying a lot when you consider I worked at UPS for 24.5 years. I got back re-hydrated and tonight my weight is actually up to 204.5 lbs.
We stopped on the way home at Wendy's and got a small vanilla Frosty, I ate 3/4 of it after taking another dose of Morphine. We stopped at McDonalds and got some fries, God knows that everything there is fattening, but I wasn't able to eat but about 7 or 8 of them. But every little bit counts. After we got home Ruth called to see how I was. I don't think anybody there has a clue that I write this blog, but should they ever find out, I hope and pray they know just how thankful I am for them in the Chemo Hut, especially Ruth.
Denise soft scrambled 2 eggs and I ate pretty much all of them. She made a pancake but I was only about to eat a few bites, still, that is better than nothing. I tried to drink an Ensure Plus but it was a bit too painful. Eating is not only painful but to make matters worse, part goes the right way and part the wrong way. You have to constantly pretty much eat slow, focus on swallowing, then be prepared to take a big sup of water and regurgitate it back and forth, plus cough... until it either heads the right way or you spit it out.
They gave me a prescription to a pain killer that goes on your arm? It is a patch thing that lasts for 3 days. They also upped my Morphine dose to 2 mls every 1 hour if needed. You mix that with water. The Morphine seems weak against this pain. Also there is something about and Morphine respiratory, don't remember what, but I have heart problems from a heart attack in 2005, and COPD. .
It is now after 10pm and Denise just got back from Food City. She bought some Benedryl cream and an assortment of baby food. I'm not sure how that stuff will taste or go down, but we're running out of options and I really, really don't want a feeding tube. My mouth is also broke out from the use of Lidocaine, must be a side effect or something.
I seriously doubt that we will be able to restart the radiation come Monday. Green said it takes time and we'd see, it may take longer. A friend of mine, Sally, asked who checks me after each treatment. I told her nobody, we get checked once a week by the doctor. It puzzled her somewhat and considering Sally is a retired nurse and her husband was a retired doctor, I value her opinion. We share the same Non Hodgkin's Lymphoma.
I had Megan take a picture of me, Denise says the picture looks better than seeing me in person on my throat. So far, unless wearing a Do-Rag or Toboggan, I haven't let anybody take my picture. Megan placed it on her Blog site, I stole it, lol. I decided to place it up once and only once here on this page. Some have asked to see what I look like and some have said they didn't want to see it. I know I don't look like myself, I kinda have the little hair thing going on my head that favors an Orangutan, lol. They say it will grow back though, maybe even thicker! If I can just make it that far. Lost most of my mustache too.
We get down there and they took me right on back. I've never seen it that full. Then again, usually I'm out of it most of the time, lol. They checked me out and I think even they were surprised to see what it looked like. we sat down by a lady and chatted for a while, she has advanced lung cancer and one lung has collapsed, but they are shrinking the tumor. She asked what happened to my throat and I told her Radiation. She immediately freaked out and said they wanted her to do radiation but after seeing what I looked like, decided not to do it. I and Denise both told her that hers would probably go easier and better, that head & neck radiation was suppose to be the worse one. I'm not sure we changed her mind though. She was terrified from the sight of my throat.
We were down there a little over 5 hours. 2 bags of fluids (saline), Benedryl, an Antibiotic, and Morphine. There may have been other stuff but I'm not sure. I got a few winks after a while and Denise would wake me whenever I started gurgling sounds so I could spit it up. The lack of gag reflexes and I think an infection starting is making it worse. I would have awaken anyway like I did all night, usually in extreme pain and choking. Denise kept the lotion applied to my throat which helped. I also want to thank Ruth, Panella, and all the ladies at the Chemo Hut. I would recommend them to anybody going through this. They are just great there and I have never seen anybody work as hard as these ladies do. That is saying a lot when you consider I worked at UPS for 24.5 years. I got back re-hydrated and tonight my weight is actually up to 204.5 lbs.
We stopped on the way home at Wendy's and got a small vanilla Frosty, I ate 3/4 of it after taking another dose of Morphine. We stopped at McDonalds and got some fries, God knows that everything there is fattening, but I wasn't able to eat but about 7 or 8 of them. But every little bit counts. After we got home Ruth called to see how I was. I don't think anybody there has a clue that I write this blog, but should they ever find out, I hope and pray they know just how thankful I am for them in the Chemo Hut, especially Ruth.
Denise soft scrambled 2 eggs and I ate pretty much all of them. She made a pancake but I was only about to eat a few bites, still, that is better than nothing. I tried to drink an Ensure Plus but it was a bit too painful. Eating is not only painful but to make matters worse, part goes the right way and part the wrong way. You have to constantly pretty much eat slow, focus on swallowing, then be prepared to take a big sup of water and regurgitate it back and forth, plus cough... until it either heads the right way or you spit it out.
They gave me a prescription to a pain killer that goes on your arm? It is a patch thing that lasts for 3 days. They also upped my Morphine dose to 2 mls every 1 hour if needed. You mix that with water. The Morphine seems weak against this pain. Also there is something about and Morphine respiratory, don't remember what, but I have heart problems from a heart attack in 2005, and COPD. .
It is now after 10pm and Denise just got back from Food City. She bought some Benedryl cream and an assortment of baby food. I'm not sure how that stuff will taste or go down, but we're running out of options and I really, really don't want a feeding tube. My mouth is also broke out from the use of Lidocaine, must be a side effect or something.
I seriously doubt that we will be able to restart the radiation come Monday. Green said it takes time and we'd see, it may take longer. A friend of mine, Sally, asked who checks me after each treatment. I told her nobody, we get checked once a week by the doctor. It puzzled her somewhat and considering Sally is a retired nurse and her husband was a retired doctor, I value her opinion. We share the same Non Hodgkin's Lymphoma.
I had Megan take a picture of me, Denise says the picture looks better than seeing me in person on my throat. So far, unless wearing a Do-Rag or Toboggan, I haven't let anybody take my picture. Megan placed it on her Blog site, I stole it, lol. I decided to place it up once and only once here on this page. Some have asked to see what I look like and some have said they didn't want to see it. I know I don't look like myself, I kinda have the little hair thing going on my head that favors an Orangutan, lol. They say it will grow back though, maybe even thicker! If I can just make it that far. Lost most of my mustache too.
Tuesday, December 15, 2009
Dec 15th
Denise took me today. We stopped in at Hardees for a sausage biscuit but I was unable to swallow it even with a lot of water. That went to waste. I slept may a total of 1 1/2-2 hours, not all at once. When we got there and signed in the Dr Green wanted to see me before my treatment. He asked why I had declined yesterday's treatment and I took my coat off, wearing a T-Shirt, showed him my arms and told him I was like this all over. He examined my arms and hands, and the swelling. I had/have an allergic reaction to the Taxitere. It wasn't the CTCL after-all. I started the predisone today, so maybe some of the swelling will be gone away.
Green looked at my throat and noticed what looks like the skin sloughing off. I asked him if that was from being dehydrated and he said no, that is the radiation. He asked if I had been using my cream and for how long. Yesterday was the 1st time I had been given cream to ward it off. I had looked up and found people using EMU Cream, so we bought some this weekend. It is slowed at easing the pain but for me the effects last longer than the quicker acting miadern. I think my skin stayed a bit better too. We decided to take a week off and if better restart next week, if not, then take another week. According to Dr Green it will not harm to take a break from radiation, we just pick up where we left off. Makes sense to me. I've 17 or 18 more to go. That was my last Chemo though no matter what.
Today has been a rough one, I almost decided not to write today. I've lost part of my gag reflexes and I can tell my throat is swollen inside because drinking a sup of water, part goes the wrong way, I then cough and even more pain. Breathing isn't all that much fun either. I attempted a chicken pot pie, didn't work, soup, didn't work, canned soup was too salty. Denise and I ate a Shoney's breakfast bar. I got down a little egg, a few pinches of my biscuit, a little sausage, and a few hash browns. 2 1/2 Ensures, 1 milk soaked Oreo. All of which hurt bad enough to not finish any of them. Even drinking water hurts, that sounds crazy, but its true. Denise seems to have a fetish with lips being dry. They are dry and cracked but that little bit is a minor discomfort to me, it is overshadowed by the real pain.
Those that have read the beginning of this blog probably remember the fighting of sleep from the pain and the fear of not waking up... well, we're here again. I am so tired and loads of pain. Surely I have fought this hard to go back to square 1. This was a feeling I thought I was past. The liquid Morphine does nothing for the pain, it does burn going down though. The Enocet gets stuck going down, again with the coughing, so it is good at helping the new pain getting a pill stuck does. My voice is all but gone and I have this random push up from my stomach to place pressure inside of my throat. I asked Denise to call Ruth to see what else could be used that will curb the pain that I could swallow. Since they are both nurses and I have no idea what is what, I just know what isn't working. All this brought on by a sneeze, hope I don't catch a cold. That was the last Chemo dose.It was what was agreed on and I don't think I could do another mega dose or for that matter a minor dose. Maybe there is something they could run in my veins again to fight off the allergic reaction I'm having and reverse the swelling.
So in a nutshell that is about it, the day has been a day of agony. I weighed in at 203 lbs this morning, I just weighed and I'm 201.5. I just took my last pain pill and I don't see anything else here except the morphine, which don't work so there is no use in taking it. I can see how people get frustrated and giving up seems to be an option at this stage of the game. Tonight, like last night, becomes the past reborn. You fight to stay awake, you make your peace with God and those around you, you fall asleep in pain and fear, knowing you may not wake back up. The only peace comes from if you don't awake you will be in a better place. I wish I could have written something more positive down, but I'm keeping it real.
Green looked at my throat and noticed what looks like the skin sloughing off. I asked him if that was from being dehydrated and he said no, that is the radiation. He asked if I had been using my cream and for how long. Yesterday was the 1st time I had been given cream to ward it off. I had looked up and found people using EMU Cream, so we bought some this weekend. It is slowed at easing the pain but for me the effects last longer than the quicker acting miadern. I think my skin stayed a bit better too. We decided to take a week off and if better restart next week, if not, then take another week. According to Dr Green it will not harm to take a break from radiation, we just pick up where we left off. Makes sense to me. I've 17 or 18 more to go. That was my last Chemo though no matter what.
Today has been a rough one, I almost decided not to write today. I've lost part of my gag reflexes and I can tell my throat is swollen inside because drinking a sup of water, part goes the wrong way, I then cough and even more pain. Breathing isn't all that much fun either. I attempted a chicken pot pie, didn't work, soup, didn't work, canned soup was too salty. Denise and I ate a Shoney's breakfast bar. I got down a little egg, a few pinches of my biscuit, a little sausage, and a few hash browns. 2 1/2 Ensures, 1 milk soaked Oreo. All of which hurt bad enough to not finish any of them. Even drinking water hurts, that sounds crazy, but its true. Denise seems to have a fetish with lips being dry. They are dry and cracked but that little bit is a minor discomfort to me, it is overshadowed by the real pain.
Those that have read the beginning of this blog probably remember the fighting of sleep from the pain and the fear of not waking up... well, we're here again. I am so tired and loads of pain. Surely I have fought this hard to go back to square 1. This was a feeling I thought I was past. The liquid Morphine does nothing for the pain, it does burn going down though. The Enocet gets stuck going down, again with the coughing, so it is good at helping the new pain getting a pill stuck does. My voice is all but gone and I have this random push up from my stomach to place pressure inside of my throat. I asked Denise to call Ruth to see what else could be used that will curb the pain that I could swallow. Since they are both nurses and I have no idea what is what, I just know what isn't working. All this brought on by a sneeze, hope I don't catch a cold. That was the last Chemo dose.It was what was agreed on and I don't think I could do another mega dose or for that matter a minor dose. Maybe there is something they could run in my veins again to fight off the allergic reaction I'm having and reverse the swelling.
So in a nutshell that is about it, the day has been a day of agony. I weighed in at 203 lbs this morning, I just weighed and I'm 201.5. I just took my last pain pill and I don't see anything else here except the morphine, which don't work so there is no use in taking it. I can see how people get frustrated and giving up seems to be an option at this stage of the game. Tonight, like last night, becomes the past reborn. You fight to stay awake, you make your peace with God and those around you, you fall asleep in pain and fear, knowing you may not wake back up. The only peace comes from if you don't awake you will be in a better place. I wish I could have written something more positive down, but I'm keeping it real.
Monday, December 14, 2009
Monday the 14th
I've kept a low grade fever all weekend on and off, but it always stayed 100F +/-. My hands are broken out as are my arms, legs, and ankles, swelled too. I thought it was the NHL but after going to the Chemo Hut today, they say it is a reaction to the Taxitere.
My mother drove me down, she took off work to take me. We had a pleasant trip and exchanged what conversation my voice is capable of. I had already talked with her about skipping radiation if my throat was no better... and it wasn't, neither was my skin. We parked at the parking lot for Panella, we knew they weren't open yet and walked over to Green's office. The young lady came to get me but I told her I was going to skip today's radiation. She said I'd need to see Green first, which I agreed, then she said Green was in surgery. I talked with Green's partner. I wish I could recall his name. Both I and mom liked him. Mom asked twice about a jell or cream to lessen the pain from the burns, the second time the lady went and got us a tube.
The doctor looked my skin over on my hands and arms and thought I may be having a reaction and was dehydrated. I told them I'd be back tomorrow but that the ladies at the Chemo Hut said if I needed anything to stop in. When we walked past the restaurant mom insisted that we eat, Panella's office wasn't open yet anyways. At first I refused but then gave in. I ate most of my eggs and almost a whole piece of sausage, by then I was full.
We started out 1/4 mile journey back to Panella's office. Mom was worried about my being weak but I really needed the exercise, I just went about it a bit slower. They drew blood work and it was better than the last time. They also saw that I was dehydrated and like the doctor at the radiation dept, was having a bad reaction to the Taxitere. They put I think 1,000 cc or something like that of saline and a bunch of other drugs to attempt to counter the reaction.
They sent a Dietitian over to talk with me and I remember 2 other people, just don't recall who, about a feeding tube. All 3 got the same answer, no.
Having mom there (she is an RN) and me being half whacked from pills (just in case I went through with the radiation) was a huge plus. She described the pain and how Endcet wasn't touching it. They prescribed Prednisone for the allergic reaction and Liquid Morphine for the throat pain. The Morphine doesn't help the pain.
My saliva glands have thinned on the secretions now but the ripping effect seems to have messed with my gag reflexes. Talk about taking 2 steps back. I can sleep on my side but what scares me is when the radiation is given I will be on my back, strapped down. Somehow drowning in one's own spit just isn't appealing.
We stopped in Shoney's and ate the bar there. I managed to get down a piece of chicken, 2 pieces of fish, and a piece of steak.
I'm not sure just how much weight I've lost, but according to my scales here I now weight 203, almost a 30lb loss. From what I can tell, most of it is muscle that I've lost. I'm beginning to wear down on all of this. It seems we have come almost back to where I was at the start of the whole thing, plus extra soreness. I pray I and my family haven't endured this for nothing.
My mother drove me down, she took off work to take me. We had a pleasant trip and exchanged what conversation my voice is capable of. I had already talked with her about skipping radiation if my throat was no better... and it wasn't, neither was my skin. We parked at the parking lot for Panella, we knew they weren't open yet and walked over to Green's office. The young lady came to get me but I told her I was going to skip today's radiation. She said I'd need to see Green first, which I agreed, then she said Green was in surgery. I talked with Green's partner. I wish I could recall his name. Both I and mom liked him. Mom asked twice about a jell or cream to lessen the pain from the burns, the second time the lady went and got us a tube.
The doctor looked my skin over on my hands and arms and thought I may be having a reaction and was dehydrated. I told them I'd be back tomorrow but that the ladies at the Chemo Hut said if I needed anything to stop in. When we walked past the restaurant mom insisted that we eat, Panella's office wasn't open yet anyways. At first I refused but then gave in. I ate most of my eggs and almost a whole piece of sausage, by then I was full.
We started out 1/4 mile journey back to Panella's office. Mom was worried about my being weak but I really needed the exercise, I just went about it a bit slower. They drew blood work and it was better than the last time. They also saw that I was dehydrated and like the doctor at the radiation dept, was having a bad reaction to the Taxitere. They put I think 1,000 cc or something like that of saline and a bunch of other drugs to attempt to counter the reaction.
They sent a Dietitian over to talk with me and I remember 2 other people, just don't recall who, about a feeding tube. All 3 got the same answer, no.
Having mom there (she is an RN) and me being half whacked from pills (just in case I went through with the radiation) was a huge plus. She described the pain and how Endcet wasn't touching it. They prescribed Prednisone for the allergic reaction and Liquid Morphine for the throat pain. The Morphine doesn't help the pain.
My saliva glands have thinned on the secretions now but the ripping effect seems to have messed with my gag reflexes. Talk about taking 2 steps back. I can sleep on my side but what scares me is when the radiation is given I will be on my back, strapped down. Somehow drowning in one's own spit just isn't appealing.
We stopped in Shoney's and ate the bar there. I managed to get down a piece of chicken, 2 pieces of fish, and a piece of steak.
I'm not sure just how much weight I've lost, but according to my scales here I now weight 203, almost a 30lb loss. From what I can tell, most of it is muscle that I've lost. I'm beginning to wear down on all of this. It seems we have come almost back to where I was at the start of the whole thing, plus extra soreness. I pray I and my family haven't endured this for nothing.
Saturday, December 12, 2009
Chemo 4 Day 3
Thank God it's Saturday. I've slept most of the day on and off and ate pain pills and Lidocane, neither seem to work. Since my blood work wasn't good I stayed home and Denise & the kids went Christmas shopping. I don't think I would have had the energy even if my immunity was strong. My throat is raw on the outside too. There are lotions that they can prescribe but they haven't as of yet. Why? I done a little reading and we came up with EMU oil which seems to help a little. There has to be a better way.
One good sneeze and it feels like my throat ripped, especially on the side the tumor isn't on. That is a definite watch out for, problem is, my saliva glands still aren't working. The spray that the lady with mouth cancer suggested works a bit to lubricate briefly, it is called biotene. Problem is that it is brief and when you awake you do so to a dry mouth that feels like it is cracking open.
So far I've managed to eat 3 or 4 bites of scrambled eggs, some mashed potatoes (about 8 spoons), 1 pudding, and drank 2 Ensures. Water even feels like fire going down. I am at a loss this time as to what will work, if indeed, anything. My voice is all but gone and it hurts to even whisper. Those that have called I either didn't awake to the phone ringing or knew I would not be able to talk. So I apologize for that.
If it is like this Monday I'm not sure what I will call it quits for a bit. The Non Hodgkin's Lymphoma has taken advantage of this opportunity and is spread all over, even the top part of my hand, and that is a first. I keep going over in my mind that if this is standard then why isn't the things you need prescribed first hand like with Chemo. It is a lot easier to stay ahead than play catch-up.
One good sneeze and it feels like my throat ripped, especially on the side the tumor isn't on. That is a definite watch out for, problem is, my saliva glands still aren't working. The spray that the lady with mouth cancer suggested works a bit to lubricate briefly, it is called biotene. Problem is that it is brief and when you awake you do so to a dry mouth that feels like it is cracking open.
So far I've managed to eat 3 or 4 bites of scrambled eggs, some mashed potatoes (about 8 spoons), 1 pudding, and drank 2 Ensures. Water even feels like fire going down. I am at a loss this time as to what will work, if indeed, anything. My voice is all but gone and it hurts to even whisper. Those that have called I either didn't awake to the phone ringing or knew I would not be able to talk. So I apologize for that.
If it is like this Monday I'm not sure what I will call it quits for a bit. The Non Hodgkin's Lymphoma has taken advantage of this opportunity and is spread all over, even the top part of my hand, and that is a first. I keep going over in my mind that if this is standard then why isn't the things you need prescribed first hand like with Chemo. It is a lot easier to stay ahead than play catch-up.
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