2-9-10

  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.

02-07-2010

  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.

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.

UPDATED:

  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  http://thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm . 
  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.

2-5-10

  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.

2-3-10

  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.  

2-2-10

  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. 

2-1-10

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.