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.
Tuesday, December 15, 2009
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.
Friday, December 11, 2009
Chemo 4 Day 2
Charlie and I went to radiation again today. We ate Hardees biscuit and gravy again. Everything looked normal and the day went well. When we got back home I decided to sleep off the cocktail and maybe go to the office a bit later and get some stuff done. I awoke to an incredible pain in my throat but rather than on the tumor side, the opposite side as well. Actually the left side was worse than the right side. That is a first.
The Lidocaine and the endocet did nothing to back off the pain. I laid back down and went back to sleep eventually and slept until Rocksie barked. Apparently I had taken the phone off the hook and even slept through my cell phone ringing too. Dad had came back to check on me and when he left, I went back to bed again. Megan came in when she got home from school and woke me briefly before I went back out. Once I answered the phone and made 1 call, both brief. Then Denise came home and checked on me.
My throat is blood red, but it is like that all around which don't make sense and very, very, dry on the outside. I'm guessing but the inside is probably the same way. It is like everything moved from the right side to the left side. I eventually ate part of a pancake Denise made me.
I have yet to throw up but it churns. A thick mucus keeps coming up yet when I sleep I awake to a horrible dry mouth pain. I've stayed kind of numb all over this time and extremely weak. My neck is burnt 360 degrees, all around. Why? We put Aloe Vern on my neck which helped a little. There isn't a single bone that doesn't hurt.
The CTCL (Non Hodgkin's Lymphoma) has went wild, looks like it's been fed on my arms and legs. Running a small temperature of about 100F.
The Lidocaine and the endocet did nothing to back off the pain. I laid back down and went back to sleep eventually and slept until Rocksie barked. Apparently I had taken the phone off the hook and even slept through my cell phone ringing too. Dad had came back to check on me and when he left, I went back to bed again. Megan came in when she got home from school and woke me briefly before I went back out. Once I answered the phone and made 1 call, both brief. Then Denise came home and checked on me.
My throat is blood red, but it is like that all around which don't make sense and very, very, dry on the outside. I'm guessing but the inside is probably the same way. It is like everything moved from the right side to the left side. I eventually ate part of a pancake Denise made me.
I have yet to throw up but it churns. A thick mucus keeps coming up yet when I sleep I awake to a horrible dry mouth pain. I've stayed kind of numb all over this time and extremely weak. My neck is burnt 360 degrees, all around. Why? We put Aloe Vern on my neck which helped a little. There isn't a single bone that doesn't hurt.
The CTCL (Non Hodgkin's Lymphoma) has went wild, looks like it's been fed on my arms and legs. Running a small temperature of about 100F.
Heroes
I see and understand why people call those with afflictions heroes, and it most cases they are. Here is the thing though, most of us aren't, we're just sick. But sick with the knowledge that God cares and should we win or lose the physical battle, we win the war because we believe in Jesus. You see, we win either way.
We watch TV movies and heroes are usually people with super powers or super powerful toys that just simply doesn't exist. When they do make one about a common person, it shows them saving large numbers of people or doing some major or almost non human event. That kind of cheats the world of the real heroes that are here and now. Many people sit back awaiting this huge moment to arise while watching other moments pass them by thinking it's just not enough. So sad though.
After a while people lose faith that there are any real heroes in the world left. The few that do a large task are usually the first to say that they were scared and knew nothing else to do in humility. There is so much focus on inhumanity that humanity goes unnoticed. It makes me sad. That is partly why I don't watch much TV. I would rather watch people.
I've seen several heroes and been in the company of them by the Grace of God... let me tell you of a few. I'll start with the health-care worker who gives of him or her self completely when working with those that may be dieing. They place self last, knowing they will suffer pain when and if these people passes... yet they do it anyway. They invest themselves in someone that can't invest back, be it kinfolk or strangers. They pour out their heart knowing the recipient may die, leaving a hole in the hero's heart, yet they press on. I saw this in the hospitals I have been in, not all health care workers, but many. These people are the real heroes, yet we never really see them.
I have a few heroes in my family, and I ain't one of them. My wife Denise is one of my biggest heroes.She sat with me for 3 days non stop in CCU after my heart attack and then after everybody finally talked her into going home, within the hour she was back and remained with me until days later I was released. She is always hovering about me, making sure which pills I take and feeding me. Least we forget griping at me when I do wrong. She provides me with warmth and love, then heads off to her doctor's office to help o Charlie Allen, my step dad has taken me to and fro for the treatments daily all the way to UT, even providing breakfast. My grandfather (I call dad) brings me food no matter if I'm hungry or not, and while his health is failing at 86, walks the food back here. Mark Hill, my cousin who all I need do is ask to feed the cows, etc...and he is there. Cindy that opens up Easy Inn 30 minutes early for us so that Charlie can buy his Coffey and me my water. My mother who bought me Ensure and has brought me food and shakes, then goes off to work in her hospital. My mom who sees to it the business I have is done, if she is able at the office. She is always calling tio see if I have need of anything. My brother who will go where ever I need to and help. Megan who offers a smile and helped clean out my gardens. My friends that call or email and ask what they can do. The many people who have prayed for me and gave me encouragement. The doctors that have been honest and worked around my fears and cared. The nurses who are so attentive in the Chemo Hut, I'll call one by name, Ruth. They are all heroes. The ladies that work in radiation that have worked with my phobias and overcome them.
I just mentioned a few, but there are so many more that are real life heroes. None of them wear a cape, save the whole planet, or even want to be seen as a hero... but they are. They actually do save the world, their part of the world.
I'd just bet you reading this are surrounded by them too. They may be hiding, but they will be here when you need them, all you gotta do is ask...and that includes asking Jesus.
FINISH LATER
We watch TV movies and heroes are usually people with super powers or super powerful toys that just simply doesn't exist. When they do make one about a common person, it shows them saving large numbers of people or doing some major or almost non human event. That kind of cheats the world of the real heroes that are here and now. Many people sit back awaiting this huge moment to arise while watching other moments pass them by thinking it's just not enough. So sad though.
After a while people lose faith that there are any real heroes in the world left. The few that do a large task are usually the first to say that they were scared and knew nothing else to do in humility. There is so much focus on inhumanity that humanity goes unnoticed. It makes me sad. That is partly why I don't watch much TV. I would rather watch people.
I've seen several heroes and been in the company of them by the Grace of God... let me tell you of a few. I'll start with the health-care worker who gives of him or her self completely when working with those that may be dieing. They place self last, knowing they will suffer pain when and if these people passes... yet they do it anyway. They invest themselves in someone that can't invest back, be it kinfolk or strangers. They pour out their heart knowing the recipient may die, leaving a hole in the hero's heart, yet they press on. I saw this in the hospitals I have been in, not all health care workers, but many. These people are the real heroes, yet we never really see them.
I have a few heroes in my family, and I ain't one of them. My wife Denise is one of my biggest heroes.She sat with me for 3 days non stop in CCU after my heart attack and then after everybody finally talked her into going home, within the hour she was back and remained with me until days later I was released. She is always hovering about me, making sure which pills I take and feeding me. Least we forget griping at me when I do wrong. She provides me with warmth and love, then heads off to her doctor's office to help o Charlie Allen, my step dad has taken me to and fro for the treatments daily all the way to UT, even providing breakfast. My grandfather (I call dad) brings me food no matter if I'm hungry or not, and while his health is failing at 86, walks the food back here. Mark Hill, my cousin who all I need do is ask to feed the cows, etc...and he is there. Cindy that opens up Easy Inn 30 minutes early for us so that Charlie can buy his Coffey and me my water. My mother who bought me Ensure and has brought me food and shakes, then goes off to work in her hospital. My mom who sees to it the business I have is done, if she is able at the office. She is always calling tio see if I have need of anything. My brother who will go where ever I need to and help. Megan who offers a smile and helped clean out my gardens. My friends that call or email and ask what they can do. The many people who have prayed for me and gave me encouragement. The doctors that have been honest and worked around my fears and cared. The nurses who are so attentive in the Chemo Hut, I'll call one by name, Ruth. They are all heroes. The ladies that work in radiation that have worked with my phobias and overcome them.
I just mentioned a few, but there are so many more that are real life heroes. None of them wear a cape, save the whole planet, or even want to be seen as a hero... but they are. They actually do save the world, their part of the world.
I'd just bet you reading this are surrounded by them too. They may be hiding, but they will be here when you need them, all you gotta do is ask...and that includes asking Jesus.
FINISH LATER
Thursday, December 10, 2009
Chemo 4, Day 1
I barely got up in time, Dense practically making me get up this morning. Me and Charlie done our usual stops and we ate Biscuits and Gravy at Hardees after our first stop at Easy Inn for my water and Charlies coffee.
They took more x-rays to make sure they are hitting the right spots before beginning the treatment. I tell you these people accurate. I'm glad that I chose to have them done at UT now.
I've stayed extremely tired today. I had planned on going in the office to do a Fannie Mae report, already late... but it didn't happen. It's almost 12pm and it is the longest I've been awake at a time.
I big sneeze and a cough make me worry if I'm catching a cold, especially since I've been in public and my blood is so far off. For the 1st time my whole throat, not just the side with cancer is extremely painful. It's taken both the pain meds and the Lidocaine (numbing) to tolerate it. The only times I have woke up so far have been to severe pain from the dryness of my mouth and throat. We bought some stuff, not what the lady there with mouth cancer told us, couldn't find it, but Mike's Pharmacy is ordering it for us, so this will have to do. It's called Oasis but the name the lady uses and stands by is Biotene (maybe misspelled).
This one will be short as I am drained. How after sleeping so much I have no idea why, but I am.
This one is for you Megan. You will know why your dad keeps smiling and can enjoy this song as much as I do
They took more x-rays to make sure they are hitting the right spots before beginning the treatment. I tell you these people accurate. I'm glad that I chose to have them done at UT now.
I've stayed extremely tired today. I had planned on going in the office to do a Fannie Mae report, already late... but it didn't happen. It's almost 12pm and it is the longest I've been awake at a time.
I big sneeze and a cough make me worry if I'm catching a cold, especially since I've been in public and my blood is so far off. For the 1st time my whole throat, not just the side with cancer is extremely painful. It's taken both the pain meds and the Lidocaine (numbing) to tolerate it. The only times I have woke up so far have been to severe pain from the dryness of my mouth and throat. We bought some stuff, not what the lady there with mouth cancer told us, couldn't find it, but Mike's Pharmacy is ordering it for us, so this will have to do. It's called Oasis but the name the lady uses and stands by is Biotene (maybe misspelled).
This one will be short as I am drained. How after sleeping so much I have no idea why, but I am.
This one is for you Megan. You will know why your dad keeps smiling and can enjoy this song as much as I do
Wednesday, December 9, 2009
In honor of a friend I made I didn't know her name
Today was her last day for chemo too. I don't know this young ladies name, but I know her spirit, it shined through her eyes. She was many a time an inspiration to us all in there. When I awoke she was gone and Denise said this was her last day. The Staff sung Happy Birthday to her, that is what had awakened me and so I told her congratulations on this being her last treatment and her birthday as well. She smiled and said thank you, encouraged me, and wished us well.
It wasn't until after she had gone that my wife told me she was stage 4 and it was in her bones. This was just buying her time. Her boyfriend also had cancer but I ever heard what kind of cancer or what stage. You would have not know that, nor would I if she thought it would make us sad. She gave forth a ray of hope and though we never spoke about it, I'm sure from her thankfulness for each day and lack of fear of death, she knows this video.
In her honor I found this video of a song that says it all. Hopefully the two people who created this will not mind me placing this in her honor.
It wasn't until after she had gone that my wife told me she was stage 4 and it was in her bones. This was just buying her time. Her boyfriend also had cancer but I ever heard what kind of cancer or what stage. You would have not know that, nor would I if she thought it would make us sad. She gave forth a ray of hope and though we never spoke about it, I'm sure from her thankfulness for each day and lack of fear of death, she knows this video.
In her honor I found this video of a song that says it all. Hopefully the two people who created this will not mind me placing this in her honor.
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