Sunday, February 28, 2010


  I've been lazy today, got up at 10:30am and went right back out until 1pm. I'm still sleepy, lol. Foot pain returned in the right foot for a little while. After a while the meds kicked in and took some of that out.  The medicine for Neuropathy does help with the pain and while I am at a low level building up, I may decide not to build up. If anything, it does increase the numbness and brings about a loss of balance. This appears to be more of a pick which one you consider the lesser of two evils. I have to weigh it out. I am starting at 200mg 2 times per day and soon going to 600mg two times a day. I'm not sure if the 600 will bring about more loss of balance of if it will remain at the current levels. It also doesn't help the ankle picking up the foot. It also doesn't effect the numbness that comes and goes on the left side of my head or my hands.

  So far the drop from 50 to 25mg patch has produced a little DT effects until today. When the DT signs stay for a while I supplement with a pill. I would imagine that Kim is 100% correct as usual, when I stop the 25 mg patch I will have to work my way back down with pills just like I went up. It's like my body has become use to this stuff.

   The neck pain is pretty much gone with the magnetic necklace. I'm not sure it will work but I am going to try some ankle bracelets to see if that will work. I'm not sure since it's neurological rather than arthritis but it is worth a shot. 

  I seem to stay extremely fatigued and when I do feel like exertion it is short lived. When I push it, and I believe that is the way you come back online, I pay for it the next day.

Denise says I have hair growing back on my ears and this time I'm not going to fuss after being aerodynamic for so long, lol.

Saturday, February 27, 2010

02-27-2010 evening

  Been a lazy day again.We ran to Newport Walmart and Newport Bargain store where I discovered than using the buggy I am more able to walk normal. I did walk like a Penguin now I walk like a Duck, lol. While the medicine for the neuropathy does nothing for the numbness, maybe even increase it, it does cease most of the pain. I can walk without as much pain and sleep without pain but knowing where I step and when my foot is down solid takes a bit more effort. My hands are the same way. It hasn't helped my ankles to pick up my foot which makes me walk a little abnormal.

   For the first time I was able to eat at least about ten bites without liquid. One of my goals is going back to eating without drinking. Long story on the benefits of doing that. I've also tried to swallow without drinking or eating, not easily done but I'm working on it. Panella had said it takes 26 muscles that have to work together and that I would need to relearn how to make them work together.

  I attempted a Dr Pepper again today. I can drink soft drinks with minimal pain now but I can't stand the taste of Dr Pepper anymore. That is something I thought would never happen, lol. As a preference I'm sticking with Tea, Water, Vitamin Water, and SoBe.

I did find this interesting, a series from Dr Mercola on a new treatment in Germany for cancer that is proved to work without harsh drugs. They also go into other diseases. It is a video that is a 7 part series. I'm not sure if you can view without signing up but I have been signed up for years and have never had any unsolicited email or spam so it is safe.


02-27-2010 - Morning

  I woke up last night three times. Once in a cold sweat soaking wet and twice with calf muscle craps that was excruciating. They were all with the first few hours and the last one I took a half of Endocet 10mg to ease off the pain. It seemed to work and I went back to sleep. When I woke up this morning my calf muscles feel like I have run a marathon. Extremely sore.

  My knees ached but with coming moisture that is pretty common as is the shoulder usually and neck.  Over the years I have learned to handle that and simply take Ibuprofen or Tylenol Arthritis. My neck was spared last night the stiffness and pain probably due to the magnetic necklace that Denise procured with the help of a co-worker and friend. I took mine off after the first chemo and we couldn't find it again, it seemed to conflict with the chemo.

  I took my handful of pills that has become regular but soon I hope will end and now I'm off to eat something before they make me sick. I did wake up rested though so the REM sleep must have been good.

Time for a little humor.This parody was written over five years ago and is now one of the most watched at YouTube. Thanks to the friend that passed this along.

Friday, February 26, 2010

Thinking Out Loud - rambling

  The waiting room was full today. I read somewhere last year the odds of getting cancer are now one in one and went on to say that if you live long enough you will have some type or form of cancer. I have two types. Denise told me of a man that had the exact same kind as I have in in the same location as I have only a little larger tumor than I had and an age difference of about 10 years. Its funny, but when people know that someone close has cancer they seek out and find someone else. I asked her last night how the man was, if she had heard anything. Whoever told her had said he died before the treatments started. The man was to do the same treatment and they put a feeding tube in. Before they could start his treatment though, he died. She didn't tell me while I was doing treatments because of the harshness of what I had to take. I thought, here I am griping about the side effects yet this man never got the chance to grip about them. A very humbling experience.

  I don't know why God allows this or how He chooses who to bring home and who leave here. I have no idea at all. I know it has changed me and I think those close to me, I hope for the better. I have always said that I would love to make a difference in the world even if it costs my life. Those words are shallow when the storm comes, easier said than done. As an old Indian Chief once said, "Its easy to be brave from a distance", and so it is. We enter into this life knowing that it is only temporary at best. Sometimes people cloud our vision and make us think that this life is all there is and is the most important thing. We catch phrases like "Just Do It", "Go ahead, You deserve it", and Why me. Mostly though we hear this from cruel corporations just trying to make a sale. Hitler once said that through repetition people can be made to believe anything and that if you lie big enough and long enough people will believe it. Now that is not his exact words but it is what he said and in effect what is taught through media and even now the schools.  This was so important to the ones that rule that in 1959 (I believe, but check for yourself), six million dollars was spent to erase the old religions out of the science books and replaced by a new religion, evolution. I call evolution a religion because nobody has ever actually seen it take place nor is there evidence to support it. School books have many, many errors that they say they can't fix because it would cost to much to amend it. Yet back then, they spent a fortune?  

  This life was never promised to be easy and God knows I pray I don't get what I deserve because I'm just thinking that it will not be anything that can be bought or that is good. As long as we are suckered into believing that life is here and now and that this is all there is, we are at a loss. We judge how good we are by looking at other people, then grade on a curb scale to see where we are using the curb to gain position, but in who's eyes.I tell my children that when we have to compare ourselves to another human, we have already lost. When we have to break down someone else to feel superior we are actually inferior. Bullies are usually nothing more than scared cowards that have a low self esteem. It is so easy to point at someone who has fallen, the real test is can you help them back up.

  The Cherokee said that the day is not guaranteed but granted and one day we will have to account for how we spent the time God allowed us here on earth. Again, not verbatim but the essence of what was told. I can see how younger people today are mislead by the science books which teach evolution, that man was a mistake. Given that being taught it is no wonder so many people are astray. They have no purpose and therefore what they do within reason doesn't matter. As a Christian I sometimes take a slap from those "more learned" than I yet I ask one simple question. If believing is so stupid and not believing is so the world a better place than it was? Are people better than they were? I think anybody with any rationality would say no, we are not better off than we were. We have more conveniences than they did before but we have become dependent and should these conveniences be suddenly taken away, we would probably not live too long. Jesus teaches that we are not mistakes but purposely created by God and that what we do does matter. So those of us that grew up in a time of correct teaching should know better. True that we answer to God who never changes but remains the same but unbelievers answer to the world run by men that change more than the weather.

  So why does God allow suffering? I have no idea but what I do know is that I have yet to see nothing good come out of something bad, there is always something good even in the worse situation. There is a small elite group that you are indoctrinated to with a life ending or life changing disease. Those of us with cancer for instance speak more openly to those who share our disease than even the closest family. Those of us who have had a heart attack speak more frankly with others who have had a heart attack. These are clubs that most, including myself, would not have willing joined. Occasionally there are those that have big mouths and openly share with the nonmembers, knowing that they can not explain what they are going through, but are willing to try. Most of us know that this life isn't forever and what comes next is worth whatever price.

  Sometimes I think we have been brainwashed to think that we ourselves are the most important thing, and I include myself in this group. I have endured some pretty bad things in my life but I never endure them alone. Its sad to think that some walk alone when they don't have to, God is always there, all you have to do is open the lines of communication. I had a doctor once that I said, "Thank God" when I received the good news that they could and have fixed and his response was, "I think the doctors had a hand in it." I smiled and looked at him and said, "True...but there are many doctors that do this but God led me to you who He granted the knowledge to help me." I got the strangest look, he pondered for a moment and replied, "I hadn't thought of it that way." That was a long time ago but I'm told the doctor definitely looked at life differently. It could have been the purpose I was created for or it could have been that God used a bad thing to make a good thing. Either way, does it really matter in the grand scheme.

  Our children spend more waking hours in the schools than with their parents. It makes it hard to compete and then add TV and we have lost even more ground. Yes, we are guilty of that too. For those who have broken the TV addiction they have Internet, something that is my Achilles Heal. In India for instance they wanted to lower the birth rate. This is going on now. They looked at how China handled the problem and it wasn't acceptable. The world might revolt against them. So they went with TV to occupy their time, they knew that would distract people. TV is so important that try and spell TV without capitol letters and an error showing that it is to be capitalized appears.

  I believe that it is important to fight back to live. Equally important is having faith that you are not battling alone. That God is not only there but He has surround you with family and friends, and that should you falter and lose the battle you still win the war. Just as He doesn't give up, neither should we. This physical life is just that... life. Living can come later when this physical battle ends, but that is not our choice to make. What we chose to do with our time that is granted however is, and we will account for that one day. Lets just hope that God judges us less harshly than we do our fellow person. In the end that is all we have and all we are. Our deeds and faith.

Ramble over....


  Went to the check-up with Panella today. We talked quit extensively which was good. With a light and a tongue depressor he visually looked into my throat and saw a lot of damage from the radiation. He wasn't able to go into my throat like Dr Rathfoot did so he didn't see the infection. He thought most of it will reverse in 3-6 months and most of the other side effects from the chemo in the next two to three months. White and Red blood cells are within normal range as were all the ones the tested for.
   We discussed the Neuropathy in my hands and especially my feet. I told him the Dr Rathfoot had already given me medicine to help with that and discussed some of its side effects. The side effect so far was exactly as Dr Rathfoot had described, loss of balance. I think I'm dealing with that though pretty well so far. Dr Panella said unless it is bad that he usually does not prescribe anything and that pain killers have little effect on the pain. That part I knew. I think my request was misunderstood the other day and that is why I got Loratabs instead of the medicine I needed. Today there is still a lot of pain in my feet but its manageable. the balance loss is like learning to walk again but I've been there before with the Pernicious Anemia at the start. With some effort, I can do this again. I'll up my shots of B-12 to two, maybe three a week and the sub-lingual B vitamins twice a day. I know you urinate out the B-12 you don't need but I have to check on the other B vitamins. I don't want to cause any more damage to my system.     

  He discussed the main game plan to get rid of the patch which was to drop to 25mg for a week then stop all together. Hopefully that will work without withdraw symptoms, if not, I have some Loratabs and a few Endocets that should stop that from happening. I'm hoping Kim reads this and gives me her opinion which I value a lot. We then end all pills, maybe even the one for neuropathy within the next couple of months. The one that helps with the anxiety attacks Denise said was habit forming. Dr Panella said it was part a side effect of the chemo and part the way I am, type A, lol. He suggested that I walk it off or dig a ditch or anything to ward them off and that I probably would have had them before this had I not kept busy. I really don't want and fear becoming a pill head. We discussed this at the beginning and Panella knows and respects that and I believe he will see to it that doesn't happen.  

  In about 3 months and again in six months he expects my thyroid to quit and they will be watching for that. I didn't tell him that we already had one test run which came out good. That was one of the sacrifices that is made and a small one at that. They couldn't kill the tumor without hitting and killing the thyroid gland. That should be a pill that manages the loss, no big deal compared to buying a casket.

  When we got there I went into the bathroom, I drink lots of water these days, lol. I heard a woman crying in the stall next to where I was which was kind of weird. I even looked around to make sure I hadn't walked into the wrong bathroom. I heard her murmuring in a low tone but I couldn't make out what she was saying. I think there was someone else in there with her. I started once to ask if she was ok, but something inside said not to, she just needed some time either to herself or whoever she was with. She sounded so sad and pitiful, I still question as to whether I should have or shouldn't have. I watched as people came in but nobody with signs of crying came in the waiting room so she must have been leaving. You don't see that a lot in there. You see a lot of worry, fear, confusion, and sometimes anger that is usually hidden with a smile or a straight face.




Thursday, February 25, 2010


  Me and Denise went for the follow up with Dr Rathfoot today. He wants me back this time in 6 weeks. I was right about what I was feeling, it is extremely swollen inside. The left side more so than the right side where the tumor was. Therein would be the key word...was. The swelling, as I understood it is from the radiation mostly. He also said that I had gotten a cold and that I had developed an infection in my lymph glands.

  I came home with a steroid, an antibiotic, anti-fungal, and a pill to help with my neuropathy, Gabapentin. Now this is what i wanted when I called at Panella's office and instead got Loratabs. I know that it will probably take some time for them to work but at least I'm getting started on dealing with this. Hopefully this neuropathy will not last long but if it does I now have something for it. Denise gave me another injection of B-12 last night and it seems to have helped with the hands and face for a while.

  He asked if I had done a scan since my Chemo and Radiation is over which I told him I haven't. Then he said the same thing as Panella. If we do the scan too early it could show a false positive. He looked in my throat for a long while today. I'm getting it down when to breathe, swallow, and make a weird noise to allow an easier passage through my nose into my throat. He even had me hold my nose and blow to open up the throat. He sat down with a drawing and showed us what he was talking about. I tell you, finding this man was a blessing.

  Tomorrow we go to Panella's office for a check up and blood work. 

Wednesday, February 24, 2010


The day started great. I woke up and for the first 30 minutes or so, I actually sounded like myself instead of Sling Blade. My feet and hands felt normal. For an instant, I was in good spirits. A few walks across the house though and the pain and numbness were slowly coming back. I decided to call Panella's office and request something to help rather than waiting until Friday.

  I asked to speak with Ruth but the lady said she was busy but she would take a message. I thought that sounded ok, so I asked her to ask Ruth for something to help with the Neuropathy in my feet. She asked if it was painful and I said yes. She said that she would convey the message and if something couldn't be called in that someone would call me back, otherwise something would be called in. When Denise called I told her they were probably calling in something to help with this stuff. I was amazed and let down at the same time, they had called in Loratab. This is a pain the Endocet don't touch and Morphine scrapes the surface. Loratab?

  This is a fairly common side effect of the Chemo and there are three drugs that I have read that address this stuff, none are pain killers. I thought I'd try it, who knows, maybe it acts differently. It doesn't. Denise even knows the drugs used for this condition and that is not even her field. This is their field and why, unless a break in communication would this not be known.  

  We meet with Dr Rathfoot tomorrow and I can't wait. Hopefully he will look again, not that I like that scope up my nose and down into my throat, but I feel more at ease. Friday we meet with Panella. I plan on having a heart to heart chat with him. I am really losing confidence between the last appointment and how it went and this. That is partly why I didn't go for fluids this week and seriously doubt I will be back. I admit that I thought after Chemo that the hard part was over, but I was wrong. The care I received at the start just went down the tubes suddenly. I guess I am a bit aggravated and mainly at myself.

  Maybe it is just the way I'm using my muscles but it seems to be climbing up. What started in my feet went to my ankles and then into my calves. As I say, maybe it is the way I am forced to walk when the pain sets in. It is a bit embarrassing though having to use the handicapped parking pass. Then again, it's painful if I don't. It also bothers my conscience too. What if someone who needs that place more than I comes in and I have my car parked there.

Tuesday, February 23, 2010


  Still the same way. It also seems to effect the calf muscles and ankles. Not in a painful way though, just a weak way. The pain is still on the pads and heels of the feet. I bought a foot massage, water bath massage, some sub lingual vitamins, and inserts for my shoes. Some temporary but very little relief all in all.

  I'm going to call Ruth tomorrow and see if there is anything that Panella can call in. I should rephrase that. I will call to see if he will call something in to help with this. I go to see him Friday and maybe this can be 1 think off the topic list. Then again I guess what happens Thursday at Rathfoot's office may alter things. Hopefully not.      

02-23-2010 Research

I found this which explains a lot: 
"Chemotherapy-induced peripheral neuropathy describes damage to the peripheral nervous system, the system that transmits information between the central nervous system (e.g. the brain and spinal cord) and the rest of the body, caused by some chemotherapy agents."

I took a whole Endocet this morning and it wards off some of the pain, but should I continue using my feet I don't think it would have a great effect.

  Come Friday, me and Panella are going to have a chat. This has gotten to the point that I can't hardly walk and most doctors address it rather than ignore it. True, a small price to pay for a little while for life but if it can be lessened then it should be to enhance the quality of life.

  A lot of my other issues were addressed by a friend that reads the board, Kim. Thank you so much. Sometimes knowing what is coming helps to understand it and that helps one to prepare. If you ever open a practice of your own I will be honored and blessed to be your first patient. You are a Godsend.    

Monday, February 22, 2010


  I slept until 11 this morning. I would get woke up then go back to bed. Mom needed help on something so I finally stayed up and got it done and then came back home about 1pm and slept on and off until about 7. I am still tired so it will be an early night tonight.

  My hair is growing back decently, I'm tickled. I am though hitting bouts of depression now. Unusual for me. I still feel like the tumor is growing back, Thursday, Rathfoot should look again and I will be pleased to know, yes or no. I'd rather it not be but either way, I can't wait for this to end. Denise says it's just scar tissue.

  My weight continues to drop, I'm (last time looked) 192.5 lbs. Probably less now. Again today I resorted to the Morphine 15mg for the foot pain even though this morning I awoke for the first time and they didn't hurt. Unfortunately though it didn't last long. They hurt so bad Sunday that I used the handicapped parking pass, even at Sears when I got my tires put on. I just couldn't take the pain hoofing it too far. Other than to buy the grill me and Denise said we would when it goes on sale, I sat. Oddly enough, setting doesn't help that much but it does a little. The guys noticed the handicapped sticker and also noticed how I walked. How embarrassing. I hate using that parking pass.

  Only 1 of the anxiety type attacks today... not bad.

  Somehow I thought when the chemo and radiation was over that it was clear sailing. I was wrong. After a while one just gets tired and feels like tossing their hands in the air and saying enough. I'm almost to that point now.

Saturday, February 20, 2010


  A beautiful day today. Me and Denise went and ran and go a lot done. We retrieved my last real estate sign that I know of that was still up. It was on top of a mountain in Gatlinburg and there were still spots that had snow there. We put a sign up in Knoxville for mom and went to Morristown and got some stuff for mark to work on Spot. I started the day tired, now I'm exhausted, lol.

  I still have intense pain in the ball and heel of my feet yet the rest of my feet are numb... strange. I still have the electrical charges that shoot for toe to head whenever I step hard. Their not painful but more aggravating than anything. It kinda scares you because it feels like a low voltage shock. The numbness has left my left side of my face and head finally, but tonight it is back.

  Then there are these attacks, for lack of a better word. I'm not sure how to explain them and tonight I had an intense one. It is like something is building inside you, a stress level that effects you and even your thinking. Like an explosion building. My hands even tremble as well as my body. It seems that if activity like a TV show with stupid people is on and sometimes when I talk to the point I hurt, this time. I really need to make a log of them so I will know how to stop them. My paientence is at an end, I become nervous, anxious, and a whole host of feelings emerge at once and it feels like I am going to explode. That is the nest I can describe it. There are probably better ways and better choices of words and probably more, but that is the best I can do to explain it. I usually take an Atavan and eventually it stops, tonight I took a second one before it stopped. Maybe it would stop on it's own, I don't know. If it would it would be better than taking a pill, I'm sure it has side effects.

  So far I have escaped Denise's cold so my immunity must be getting better. She is almost over it now. The breaking out is still occurring. It stops for a while then comes back. This is the first day since we dropped the patch to 50mg that I was able to eat and the breakthrough pain wasn't bad enough to take anything. That is a good sign. Next week I go to 25 mg and in about 2 weeks I go to none. Thank God. I would much rather go back to pills because I only take them if I need them whereas this patch gives me a constant supply of pain medication. I'm sure it was needed at the time but I would like to control when and if I need anything.

  I've lost back down to 192.5 pounds. The appetite just isn't there. Then again, eating meant pain until today. It was somewhat painful but nothing like it has been. Soft drinks burn but I can drink them, Pepsi, Coke, Mountain Dew and probably Dr Pepper, I just don't like the Dr Pepper anymore. I just have chosen not to drink them. I prefer water, tea, SoBe (certain flavors) and vitamin water (certain flavors). Who would have even thought that, lol.

  My hair is still coming in quick but it can't get here quick enough for me. I have a beard of sorts. You can see where the lines are that the hair follicles are burnt out, no hair grows there. It actually came up much farther than I thought and that is probably why the two teeth went on the bottom, I'm guessing the dentist was talking about three above those that I will lose.

  We went to Walmart and again, I have maybe 20-30 minutes at best before my mouth and throat becomes dry. The drier it gets the worse the pain and it begin to crack open. There have even been times where it bleeds. This I know is a side effect of chemo that usually goes away but that sometimes it never goes away. I am praying that it does go away. I have almost gotten to the point of carrying water into a store with me. It takes quite a while to get it back moist enough to ease the pain. Usually I wake up at least twice a night and have to drink a few sips of water. It isn't as bad as it once was like when I woke up and had to present an answer before sipping water and cracked my throat severely. I went back to just one humidifier in my bedroom, the other I put in the Sunroom because the plants need it more than I do.

  There is some depression still but I'm working on that. I keep thinking of what I have got going and try and figure out how to get back what I've lost. Most of this is on independence, strength, and memory. I think anything that drags out, like sickness, will bring about a certain level of it. First comes the frustration and then it is followed by depression. Then I suck it up and begin to figure out how I can change that.

  I still each night think about those that I was in Radiation with, especially the lady that was taking mouth and throat radiation. I wonder how they are and pray each night for them. I go back next month to see Dr Green, but they will be done and gone by then. I pray they will be ok. I had the honor of meeting some of the strongest, kindest, most humbled people in the world, yet I never knew their names.   

Friday, February 19, 2010


  Beautiful day today. I got a few things done but in the course, by the time the day was over I'm paying for it. I put new windshield wipers on both trucks, had tires put on Big Ugly, fixed Denise's rear door lift, and ran around. I got all the plants and tress in the Sunroom watered. Most importantly though, I got blood drawn for the thyroid test today.

  Towards the end of the day a lot of break through pain and before night fall I broke down and took an Endocet and about 1AM had to take yet another.

  The left side of my face and forehead, left foot and hand and arm went numb, except for the pain in my heels and in the ball of my feet, very tender. Rash is still in effect but mostly favoring my left side. The patch this time is on my left side. I'm wondering if there isn't a connection.

  I'm back to losing weight again heading back to the lower 190s. Some of it is due to break through pain, some due to just lack of appetite. It still feels like a knot in my throat and swallowing is become more difficult. Denise thinks just scar tissue... I'm not so sure. My voice is still weak and gruffly and goes out after a while. The dryness continues but seems to be improving a little. I still carry about a bottle of water with me. I've went back to using Miracle Mouth Wash.

  Denise is sick and hopefully I have enough resistance to ward it off. Crossing fingers....   

Thursday, February 18, 2010


   This is today's. I'll quit posting as much as it goes along. This is looking more or less like a diary. Thank God that the drama seems to be slowing down, I'm ready. today the pain is all but gone, it didn't start that way but it has improved over the day. I never thought I'd get to this point at times, but I didn't get to this point on my on. God, family, friends, and a great staff of medical people. In no way did I get this far on my own. I have made new friends on this blog, renewed old friends.

  I have HAIR! Well, at least it has started back, lol. It seems to be growing faster each day and for me it can't grow fast enough. I have somewhat of a beard for the first time in over 20 years. I'll probably shave it but I will take hair anywhere it wants to grow, plus it shows the lines of the radiation. The radiation burnt out the hair follicles and according to what I was told it will never grow there again which is most of my face and all of my neck. That mush I won't have to shave when I start back shaving. See, there is always a dry spot in the rain, lol. Try this. You can't bring darkness into a room of light and dim the lightness but you can bring a candle in a dark room and lessen the darkness.

  I spoke with Erin Brown from National Geographic. If you read this I enjoyed our conversation and will watch for the new show and if I am selected maybe we can meet face to face.

 Well, it's bed time again. Denise watched me eat the Cheeseburger she fixed tonight and by the time I was full I had sweated enough to look like I had taken a bath from the pain. It is almost like it was in the beginning. I can actually say this time that sweat actually ran down my hair, lol, rather than just off my skin. I took one of the humidifiers out to the Sunroom so that our plants could keep moist. The banana plants and palms are wanting outside asap. They have taken a beating this year, I haven't cared for them like I should have. I lost one of the rare ones but I didn't label it so I have no idea what it was.

  My feet are still the source of a lot of pain and my hands are still numb but I think the B-12 shots are working on that. I skipped them over the last couple or three months and I knew better. This is the price I pay. My rash does seem to be diminishing slowly though. The attack only came once today of the nervous system or whatever that is that makes you feel like your going to just explode.

  One of these days I'm going to list the things I used not prescribed but told to me by other people that helps in this. All are mentioned I think throughout the blog but having them all together I think would be better. I edited this page numerous times so I apologize for all the editing.

Next week can't get here soon enough. I especially can't wait to see Dr.Rathfoot and have him take another look now that the swelling and burns have lessened. It feels like it is growing back but it could be that with lesser pain medication I am feeling more than I did plus Denise has had a sore throat which is now turning into a cold. I should have enough to fend off something now, I think. If not we will work with what we have to work with again.  


02-18-2010 part 1

  I skipped yesterday. Me and Charlie went to UT to get more fluids. I started about 8:30 am and finished a little before 1:00 pm. Usually they add something to relax me but they didn't this time. Actually it usually makes me sleep. I did sleep on and off but mostly I was awake. It wasn't as busy yesterday like it has been being, a good thing to see. They ladies there, especially Ruth, still worked hard. There are volunteers that hang out and come by ever so often to see if you need anything. Warm blankets, ice cream, drinks, and occasionally food.

  I overheard a lady that came in and had a port talk with the nurses, she must have been a nurse that worked with them. They all seemed excited to see her and they sat and discussed on and off what she had been up to. The lady was a very happy person, extremely positive. Before she left, as she was dressing, she looked at the ladies and said something like, "Chemo Brain. There is such a thing you know. I've experienced it and people were right. It is real. We talked about it in my support group." One of the ladies asked if she had experienced it. She said that she had and used an illustration of, "Say I wanted to tell you about a carrot, I might say something like highway instead of carrot and not realize what I said." She then said, "You know, we don't fully understand Chemo yet and I'm finding that out. When people would tell us about crazy side effects, they probably exist but we dismiss them." They chatted a bit more and one of the nurses asked about the Chemo Brain and how long it lasts and that it always isn't an immediate side effect. The lady responded back different times, it can even go on for years... sometimes forever. Whoever this lady is, she had their respect as a fellow worker.

  I haven't researched that yet. Actually I've heard the term Chemo Fog but never heard of Chemo Brain. That is perhaps the second scary part of this, the fact that they don't know all the side effects. Whats the most scary part of this? That those in charge don't listen. Imgine living in a real nightmare, no escape and those that are in charge don't believe you. That would be horrible. You would not be able to get any help, stranded and deserted by those who should be helping. Why is it that nobody listens to the average person? How many people did this lady disbelieve? She now knows and hopefully nobody will turn a deaf ear to her and maybe she can help to change that, but it will only be just one aspect of this unknown treatment.

  The one thing I know for sure is that I don't know everything and I beg I always know this, especially if by my thinking I know everything someone suffers because of my arrogance. I thank God that this isn't one of my side effects and pray that it doesn't come my way. I think I know what the Chemo Fog is, maybe it was just all the drugs for pain in my system, but my thinking is foggy sometimes. Then again, that may be natural, lol. After my heart attack in 2005 I have a hard time with short time memory. Denise says it's selective. lol.

   Anyway, during the time I was there I ran out of water towards the end. Instead of asking for something to drink I decided that I could wait...big mistake. By the time we switched out from Charlie's truck with mom's SUV and made it to Shoney's, I was in misery and it has taken until today to half way recover. My voice is still coarse but the pain finally went back to a tolerable level. I ended up taking pain pills twice yesterday, once when I got home and once before bed. I keep water close by and have since about the tenth session of radiation. This has gotten rather long so I'll do another post for today.      

Tuesday, February 16, 2010


  Another day, but a better one in some ways. More pain is seeping through when I eat, except the Banana Popsicles, lol. My left foot some better but the right is making up for it. Only threw up once, just a while ago, could have done without that, especially those that catch you off guard and go out your nose. OK, thats probably T.M.I. lol.

  Been another lazy day. Did get some stuff done for mom, actually a lot. Tomorrow I'll rest up a bit.

  Denise has a sore throat... sounds kinda like me, lol. I've heard that when your married long enough you start to look alike, never heard you would sound Hopefully she will feel better tomorrow.


  If the snow ever quits I'll get more fluids.  

Monday, February 15, 2010


  Much better day today. Still extreme pain in feet and at the same time they are numb... definitely weird. Hands still numb and just a little throat pain after eating tonight, nothing major. My neck is still a little red and still burns a bit, like a mild sunburn.

  I decided to let hair grow where it will, lol. My "soul patch" is salt and pepper and you can actually see the radiation lines, lol. It actually comes up pretty high on the lower jaw, higher than I though and where the two teeth I lost are located. I've been tempted to shave but I want to see where this goes. Amazing what boredom and a small mind will do,lol.  The hair on my head is growing face but in the front where it was already thin, it looks like it may be thinner. It seems to be coming in salt and pepper too. No hair coming back anywhere else. My back neck line is higher than I had thought.

  No nausea today for a change. As we go down on the patch, more pain shoots through. I'm curious to see what level it will be at the next drop. Not that I'm into pain, but I also don't want to be a junkie.

  Bouts of fatigue but they don't last long. Bone pain and some of the nervous attacks. I haven't talked as much today, hard to believe, eh? Still struggling with hydration and weight. Rash seems it may be decreasing.

  I went back on my blood thinners yesterday. Depression at times and brain fog.

  Overall much better than yesterday. 

Sunday, February 14, 2010


  Today has been a set back. I guess I'm paying for 2 active days. Not active in the sense I once was, just active. With only 1 trip for fluids last week my skin is drying out. The rage is still as it was. I've never fully regained my balance or use of my left foot and leg which is weird. The pads of my feet are extremely tender and it still feels like lightening bolts ever time I step shoot through my body. All that while I freeze and my hands and feet stay numb everywhere else. Today, my fatigue was extensive along with a sick feeling in my stomach.  Memory is gone, especially short term. Within 1 week I have lost 6 lbs.

  While I glad that I am weaning off the patch, it did do more than I had thought. We ate at Captain D's yesterday and my throat was as if if were raw. I had forgotten just how bad it hurts, that reminded me. Weather permitting, I'll get my thyroid checked maybe tomorrow and fluids Tuesday or Wednesday.

  My hair is trying to grow and I have a small go-tee. This is goig to take a lot more effort than I first thought.     

Friday, February 12, 2010


  Woke up in a touch more pain, but not much though. I'm just glad we're stepping down the patch and can't wait to do away with it.

  I've stayed busy today running errands, Matt to Morristown to get his van, the to Sevierville to buy a welder, then to Russellville to do an inspection and BPO on a house, then the paperwork. I'm tired and I bet I will be paying for this day, lol.

   My weight is 193. Not tickled about that but hey, I still made it without a feeding tube. We've begun the step down on the patch and today I woke with just a bit more pain, but nothing intolerable. My rash is still ongoing, have no idea.

  I didn't go but once this week for fluids, I may go twice next week... naa, probably once. My feet still feel like the front pads are swollen, but they're not. It is extremely painful to walk, the left foot seems worse than the right foot. It is both front pads but only 1 heal that hurts. They are numb yet painful... how does that happen? That don't even make sense. Hey, I even drove myself!

  I still have to watch and really focus on eating, least I get choked. The same goes for drinking. I attempted a Coke again today. Key word in that was attempted, lol.

On a good note... I'm beginning to get hair! It seems to be growing really fast on my head and chin. It still hasn't graced the rest of my body yet. The more it comes the warmer I feel. The pale death look is leaving and I am slowly getting some color back.  Now if I could just build my muscles and stamina back. Then again this weather would need to cooperate. Bone pain seems to be the next order to tackle. Then again, swelling
going down where I can swallow normally would be nice. As soon as I can, I need the 5 or so teeth that radiation killed took out, that would help me chew.

   Actually I'm in a good frame of mind today even though it may not seem it. I thought I'd just keep it real.
  I never got my thyroid checked yet, need to.

Thursday, February 11, 2010


    It's been another day of mixed. My throat has been killing me today and I have stayed tired, so tired. We dressed my neck last night and I will dress it again tonight. I've gotten fluids once this week and that was the only time, perhaps twice next week? My preference was to rest and sleep but I ended up going with mom to Pigeon Forge to straighten a property listed, rental cabin. Funny how people can lie on the phone but not a easy face to face. I think it's straightened out now and mom will be OK on this one.  I actually drove it!

    My appetite is still missing. I ate 2 pancakes this morning and 1/2 a piece of chicken. I bought the chicken and should have remember that I can't eat extra crispy just yet, for that matter the spices aren't too well. My mouth is sore and I have an ulcer on my bottom lip... bet that has something to do with the upset stomach the last few days.  But at least it didn't go to waste, the kids and Denise ate it.

  Again my heels and pretty much the whole bottom of my feet are tender and painful to walk on. I'm not sure what that stems from. It feels like the whole bottom of my feet have stone bruises. That's not counting what feels like voltage shooting up every step I take, it actually doesn't hurt.

  My hair seems to be growing at a great rate... Thank God. Even mom noticed it was coming back today when I took off my toboggan.

  Tomorrow I run Matt to get his van then head to Sevierville Exxon to buy a stick welder at the place he and I discussed meeting.   

  Perhaps tomorrow will go better and should I need rest I will get rest. Although it would be great not to even need rest. It does get old after a while.

Tuesday, February 9, 2010


  I didn't write yesterday, it was one of the not so good days in a lot of ways and yet it was not too bad as well. I got the dishwasher instillation finished and re-plumbed the sink too. I took my time and when I started sweating I stopped until I cooled down ever mindful of the patch. My feet and bones ached yesterday and my balance wasn't the greatest.

  Today me and Charlie ventured down to UT for another drink, lol. We stopped at Hardees to grab a bite to eat and were the first into the Chemo Hut. I got the pick of the chairs, lol. I try and get the one on the end close to the bathroom. Charlie headed to Sams after they started. I slept on and off but when I was awake I learned a few things. I asked to see my blood work and they gave me a copy. There are seven things that are marked that stand a need for improvement. Some are within normal ranges barely. The nurse said that in all her years working in the field that she has only seen a few other times that such an intense, aggressive plan had been used and that I had surpassed all expectations. As she explained that I still have a long way to go, that they had never seen anybody fight any harder or make any better progress than I have. They are pleased.

  A little later on I asked another nurse about the pain patch and if I could cut back on the time it takes to wean off of it. She said that in all her years in this field that the treatment plan chosen for me was the most aggressive plan she had ever witnessed, and one of the hardest. She said she was surprised at how hard I have fought and that she was pleased at the progress I have made now and throughout the whole process. She and the other nurse earlier had both said how they have never seen a harder therapy plan and how they  were surprised at how I fought throughout this whole thing and the progress inch by inch I had accomplished.  She said for a while she wasn't sure how this would turn out and while she never spoke or showed it, she said my attitude was the ray of hope she had that I would make it through this.

  On the way back we stopped at Shoneys where the ladies there said that I had been such an inspiration to them. They watched me struggle to eat, saw the pain in my face and yet I didn't complain, I always just smiled. The say they hear people come and fuss over a head ache or a muscle ache and frown and be hateful and yet through all this I always smiled and was courteous.  

  All three instances I thanked them but said that I deserve none of the credit. I have a lot of support from a great family and friends. I had many, many great people who prayed for me and that prayer works. The P.U.S.H. Pray Until Something Happens. There were times I wanted to quit, one time stopping eating for three days. There were many times I was carried not only by family (literally) but by Jesus throughout this all. Then I was blessed by being cared for by people who actually cared, not just there to do a job, but really cared. To take credit for this in my opinion would be wrong on my part for I could not have done this alone. Thank God I did not have to try, for I would have failed. Yes, I have fought but I have done so by the Grace of God. Blessed by my family, friends, and staff that worked on me.

  Tonight Denise looked at my head... I am getting some hair back! Already I have a baby soul patch trying, lol, and now it has started back on my head. Some of it is coming in black and some gray... hey, I'll take it any color, lol. Anywhere, lol.

  The soreness in my throat is not too bad today, so much different than yesterday. I still get choked easy but we're working on it. Today... I ride atop the world. Tomorrow... the world may ride atop me. Either way, each day is nothing more than a battle in the war.

Sunday, February 7, 2010


  Denise and me certainly done our share of running yesterday... and it was fun. Today though I have paid for yesterday's fun. My throat has been extremely raw and sore and I have just ran out of energy. Today I just lazied around except for starting the instillation of a new dishwasher. It should have been about an hour job. Come to find out it needs a special reducer elbow and I just wasn't up to a trip to Morristown to get one. That will have to be finished tomorrow. This is going to take longer than I thought to get back on my feet. Yesterday Denise said she could tell I was tired. I started losing my balance and dragging my feet rather than picking them up and walking. Personally I didn't notice. 

  Denise noticed some new hair growth on my head. It is coming in part black and part gray or blond, not sure which yet. I have a "soul patch" attempting to grow, lol. It is gray but I'll take hair any color at this point, lol.

  The rash is still ongoing. Old ones dry while new ones start. It is painful to some degree. My skin is still showing the signs of dehydration so I will go back some time this week and get more fluids.

 Swallowing has been all but impossible today. It hurts when i do and when I don't and getting choked is very easy to do. I will skip the blood thinner pill for fear of not being able to swallow it.

  I wonder sometimes just how long it will take. It does get a bit depressing after being so active for so long. Add that to not having hair and muscles, and it gets to me sometimes.

Friday, February 5, 2010

Check Up

  We met with Panella today for my check-up. It was a mixed bag of good and bad, but mostly good.

   I assume that my blood work was good, but they never went over it. I can go back on my blood thinners again since my platelets are back up to normal range. He looked into my throat and saw it was still swelled and scared. He said that was the reason for the pain still swallowing and the reason that sometimes (often) the food if I eat too fast goes up my nose. That should get better as time goes along. He said to eat slow and get some stuff that is thicker to drink or makes what you drink thicker.  If that doesn't work, they will have to stretch my throat.

    He said the pain patch was the reason for my fatigue and so we start the drop to 50 mg for 2 weeks then to 25 mg for 2 weeks the no patch...Thank God. I can't wait to be rid of that.

  I still need hydration but I should be needing less as time goes along.

  The bad was the rash wasn't explained. He said he would take a biopsy of it if it is still there next appointment. He has no idea why my forehead is numb. He also does not know why I had that day I lost my balance completely for over 24 hours.  Also he had no explanation of where or why I threw up blood lately a few times.

  The numbness in my hands and feet, along with what feels like voltage that comes from my feet to my head every step I take (no pain though) are side effects from the Chemo and should go away eventually. Also included in that is the bone pain that I experience and the soreness in the pads of my feet.

  Good part is that Denise says it looks like I have fine hairs growing back! I even have what looks like a "soul patch" growing, lol. The neck and beard area though will not come back as they burnt the hair follicles out. That just means less I have to shave, lol.


  I discussed with Denise and we will have my Thyroid levels checked. From what Dr Green said the radiation treatment will burn out my Thyroid Gland in time. To be sure it isn't time a simple test can be done. I awoke at 4am, nothing unusual, I almost do every night. As usual, I got o the computer and started to research. This could account for the rash, staying cold, foggy memory, muscle cramps and a lot of other things going on right now. Why this isn't checked when they draw blood who knows, especially since it is a known effect of the radiation. One of the sites I found is at . 
  It is geared to women but I think skipping a few things, lol, it has a lot of info that applies to both genders.

  Now... back to bed.

Thursday, February 4, 2010


  We went back to UT today and got more liquids and less Lorazapan this time. I slept through the session but when I awoke I wasn't drunk feeling. Even with all these lately I still have a very dry, swollen throat. The rash has advanced and some of my skin feels rough like a reptile. The lady giving the IV sorta freaked out at my arm when she saw the rash. She said that she was going to get Ruth to take a look but never did to my knowledge.

  Tomorrow is a scheduled appointment with Panella, so we get him to look at it. It almost looks like CTCL but then it also looks a bit different too. Parts of it burn, parts of it itch, parts of it hurts, but mostly it is just there. If I knew for sure it was the CTCL I could start up the NBUVB machine and do some treatments. The front pads of my feet still feel puffy but they don't look puffy.

Wednesday, February 3, 2010


  I got up early this morning and I had my balance back pretty much. Sill a bit shaky but at least I'm able to walk without going to the right and bumping into everything. It's still unclear what happened and we will mention the event to Panella Friday at the office visit.

  Tonight the numb feeling in my forehead is back, not sure what that is all about either. The rash seems to be drying up on some place while new places form right beside them. I've stayed very fatigued today and about 3:30pm fell asleep for about an hour or so.

  Just a trip to Dandridge to register Big Ugly and get insurance of Misty' house wore me out. I've got a good appetite lately so I'm sure that I've gained. the back of my throat is dry to the point of being painful yet I make saliva. Numbness is still in my hands and feet and bone pain today.

   Not a bad day but I guess I am just so ready to have not just a not a bad day, but a good day. At this point I would take what I would call a bad day just a year ago.

  Megan took a picture of me and I didn't even know who that was in the picture, depressing.  

Tuesday, February 2, 2010


  We went to the Chemo Hut again today and they gave me 2 bags of fluids and something else to ease me, but don't know what. It kept me asleep all the day. from about 9am until 1:30pm. When I got up was a bit dizzy but I figured it would wear off since I was also still sleepy. I walked into the back f some man's truck heading for Charlie's truck, lol, he was sitting it in. As I walked on past I bumped into his mirror, what a funny look he gave, lol. As long as i am sitting down, I'm ok, but let me get up and attempt to stand still or walk and suddenly I look like a drunk. It made eating a Shoney's buffet a real challenge. We also checked out a new salvage store and Charlie told me to watch out a lot as I bumper into many things on my right side.

  Denise came home and we went to Sears to get a new Dishwasher. She held onto me so I could walk straight. She watched me clumsy bounce off things and when we stopped to talk with Linda on a machine, I finally gave up and leaned on one of the ones in the isle.Then we went to Walmart, again she guided me.

  When we got home she had me grip her hands with mine, push up and the down with my legs... everything was normal. Just a while ago she had me look into her eyes facing her and noticed that my right eye is lower. She thinks I may have suffered a mini stroke. The right eye is drooping.

  I'm going to try and get more Thursday and I'll ask, if not then Friday when I see Panella I will put that on the list.

  Despite sleeping all day.. it has still been a good day. 

Monday, February 1, 2010


It's not been a good day today. Ever since throwing up last night I've had problems. Mt throat has stayed swollen inside and painful. I've stayed fatigued all day too. The numbness in my hands and feet haven't gotten any worse and perhaps feeling bad makes me notice that even more.

   This led to another getting choked on another pill today, blood pressure pill this time though. I didn't throw up at least. It's like there is a hole that small pills and food gets stuck in and they get lodged there. It makes for an odd feeling and sometimes, like last night, a painful one if they begin to dissolve there.

  Another thing that gets annoying is if I eat enough dry or eat fast it seems to travel into my nasal area. when this happens there is a trick to do. Seal off you throat, tongue or whatever before trying to suck back through your nose, or it heads towards the airways. That does lead to choking. I done that on a roll tonight.

  It has also been a day of cold sweats and chills. The chills actually don't come the same time as the sweats. I feel perfectly warm, not hot, not cold, when the sweats hit.

  A bitter taste as well stays in mu mouth but today, exceptionally so. Nothing you eat or drink will do away with it. Brushing your teeth will get rid of it for a few minutes, then it slowly works its way back.

  The rash is drying up in some places but a new rash is forming in others. It almost looks like the rash I got when the chemo backfired, just not as bad.

  A good note though, my neck feels like a bad sunburn on the outside now and getting better.  

  I'll assume that this is just part of it but will mention it to Dr. Panella this Friday.