03-31-2010

It's been a day of painkillers today. Between two broken off teeth abscessing and my left side of my throat it has been rough. I've had to maintain a constant supply of it today. I picked up my X-ray but Boyd was closed by the time I got there, I'll take it tomorrow first thing. Maybe after Sydney talks with Green it will be ok to get the damaged ones out soon. It is amazing the damage that radiation does. I did get some stuff done today though which felt good. Big Ugly is once again read worthy, lol. I have the concrete squares in place for the gas grill patio but it needs to be bigger so that is at hand tomorrow also.

  Matt & Misty came back here and I caught a couple of pics of them. This car will be so cute when they get it finished.

  My voice done ok today as did my swallowing, tonight however it falls back again to bad. I got choked easily again and it is swelled tonight making it hard to breathe once again. From what Rathfoot said it is the acid reflux that is eating it up. I also read that another person was having trouble after radiation with acid reflux. They are also having trouble with saliva glands as well. I have found that while water does keep you moist somewhat, the glands respond better to something like Vitamin water, Yoo-hoo, Tea, etc. Prepping to hit the bed again.

  While I think of it, the CTCL is helped by ocean water and the sun. I have spoken with two other people that go to the beach ever so often just for that and it helps them too. I thought of that tonight after Denise made our reservations for the beach. Funny, before all this happened we talked about going two or three times a year for short durations just for that.   

03-30-2010

  Been a day. I ran errands all day today. I got the new monitor hooked up at the office then drove everywhere. I ended the day with me and Matt heading to get a car I accidentally bought on Ebay. It turned out good, despite what Denise thinks though for Matt and Misty had been wanting it. How odd that we were both looking at the same car. I know they will enjoy driving it with the top down this summer. If I can't ride the bike this summer I can always drop the top on the Skylark and we can follow them.

  I bought five Strawberry plants and some cabbage plants. I got spoiled last year eating what few strawberries we got last year from one plant. I never got to harvest my cabbage so hopefully I will this year. God willing, I will sneak out tomorrow and plant them.

  Today the two last teeth to be lost began to abscess and on and off all day pain and a fever. I used some of the Loratabs to ease it off. My neuropathy tonight has kicked in full gear, today it ranged from ok to not too ok, coming into it's own tonight. My throat hasn't given me a minutes peace today and my voice has been all but absent. Tonight the referred pain in my left ear worsens and I have been able to make a weird noise all day. My day yesterday at the junk yard coming back to haunt me?

   The CTCL is on one of my eyelids now and working on my eyebrows. It has been a long time since it got that part. If there was such a thing as the sun it might help drive back the CTCL a bit, lol. The had thing to work around I can already tell will be just that... sun. My neck stays heated and red and it doesn't take much sun to burn like fire. Green also said that I will have a greater risk of skin cancer on my neck now. I know that sunblock is very caustic as is suntan lotion, so where is one to meet in the middle at? Once again I can feed one or the other cancer.

  On a metal and emotional note I might mention. One goes through many emotions throughout the roller coaster ride. I can't even stage it from here but I'm sure it shows up on the writings at that particular time frame, but I'll deal with now. The level of frustration is high and the tolerance for people getting angry is low. There is a point that I have come to that I know I need to stop and heal, something that wasn't possible for a couple of weeks because I was needed and events beyond our control was at hand. There is also a point to where frustration steeps high due to a lack of not being able to do, especially if they were very active to start with. Fussing at the individual is actually detrimental to anything being accomplished and actually detracts from anything positive, especially desired results.We have very little patience with ourselves let along someone fussing and getting mad. Life is short and I think anybody who has been through this realizes that life is nothing longer than the flicker of a candle. So... how do you want to spend your time? Angry, or making the most out of each minute you have left.

         

The Sign

Now I know this may be hard to read but I took a picture of the sign today. I'll try and get a better one tomorrow.One day while coming back from Chemo or Radiation, I don't remember which, I was sick as a dog. I had just decided that I would give up. Somewhere back in the older posts I talked about it. The way it sets one can just barely catch it. This made me try again, I saw it as an omen. Well Here it is.

This sign reads simply:

Never Give Up

Never Give In

 Never Quit Trying

03-29-2010

Wet and cold again today but Matt and me went to Pull-Apart, man did we have fun, or at least I did. I found the armrests that I needed and then some. The chemo fog set in again and I remembered Big Ugly having a cracked tail light, right and wrong both at the same time. I had Cody fabricate a flat Steel Bed for Big Ugly so the tail light I remembered was gone, no longer needed, lol. I guess I can just save it in case Spot ever needs one. We ate, went to Harbor Freight then home. Neuropathy and all, I made it around. It worsened as the day progressed.

Megan and me went to Sears and bought a new refrigerator. Ours is still working but it is old and cannot last long. We will probably use it for a spare but may give it away. Denise wasn't thrilled with the final cost but it was what we both agreed on and with the warranty even on sale over 1500.00! Things have gone up. Another thing marked off the list now.

The CTCL isn't letting up and my eyelids are pretty bad. My left side of the throat is hurting pretty bad and tossing referred pain into the right ear. Denise says its where I have been outside in the cold damp weather. I finally just before writing gave in and took a pain pill, but a lesser one. Denise's back is finally better ad Megan's Intestinal bug is gone, but I think she may have passed it to Misty and me.

If my body so sees fit, I have a lot to accomplish tomorrow. Help mom in the morning and maybe start the small area where the grill will go, actually I'd like to finish it an grill tomorrow night, a dream I know.

03-28-2010

It is another wet and cold today but for some reason (I'm not complaining) my neuropathy backed off a bit in pain. Then again, I didn't do much today either. I did notice my head swimming when I went to Sears and by the time I went to Walmart, I needed a buggy to help maintain my balance. Buggies are big walkers. This was however a different balance thing, like spinning, even when sitting down. Even with a lot of gray hair I still love it yes Denise, even the beard.

After a brief stop by moms and talking a bit on the phone with Misty, Denise and I were sitting in the living room watching something on the History Chanel and I just hit another wall of cold and exhausted. I had these bouts all day periodically and I went into the bedroom and said I'd be back... I didn't. I slept from a little after five until about ten-thirty. It's after one am and I am about to go back to sleep again. Today I've had a lot of fatigue and depression. I have always had the ability to work to get things off my mind and this time I face it without that ability. Dad is truly missed yet I know he is in a better place.

The Non Hodgkin's Lymphoma is raging and is all over my body now. Funny, it appears they have killed one cancer and fed the other. I will still wait until I meet with Green next month to see if I can resume the NBUVB, it may have progressed past that now though. I have decided if it has, I will let it take it's course. That is not depression nor giving up rather just exhaustion speaking along with knowing what I can and cannot do, and what I am willing and not willing to do. There are a few things to get done that I have found in order to get my affairs in order.

My weight and hair have both increased. I welcome the hair, lol...not the weight. I have put myself on a diet until I can actually do physical work...a lot of it too. The only place I have a tan is my neck, which is still very reddish in color and still feels hot inside. My voice weakens quickly even with water or liquid to keep it moist. I go from a Sling Blade voice to no voice rather quickly and you know me, I like to talk.

I write what seems at time trivial to some and unrelated yet for those who go through this it will hopefully let them know, along with their family and friends, what the mental and emotional aspects that can be. That doesn't mean they will be. In part, this is like a diary now and I have opened up to say things you would not get from me when we talk. This is a game of hurry up and wait now, but isn't all life like that? In the meantime I want to open up just to let those who read and stumble across this that whatever they feel, its ok to feel it for we have all felt that before. There is religious preference in this to know what I know, you are not alone even in your darkest hour unless you want to be.

I would like to see more feedback on this blog, let me know what is and isn't, questions one might have. Things one might like more or less of. Things you wish to know.

Good Night and God Bless...........

03-27-2010

I woke up this morning in a lot of pain both in the left side of my throat and referred ear pain. I basically started out the day with a hit of Morphine... not a good thing. my neuropathy was still raging but not as bad as yesterday, but close. We managed to get the taxes done late last night and went today and had them done at H&R Block, 500.00, but I'm glad its done now. That was some stress off.

I got very little actually accomplished today but I tried to take advantage of the beautiful day... just didn't quite work. Megan has an intestinal bug and Denise's back is still out. I had a hard time with balance but I'm not sure exactly why. I can now fully understand dad's frustration. mentally you know what to do but the body isn't willing and the mind will not retain some things that need to be done until it is too late to do them. If this is a glimpse into the future I hope that isn't right, if so, they can have it.

We went to Morristown to get a screw that Sears forgot to put in the new Grill, some pavers which God only knows how I will get them in place, Easter baskets, and look at refrigerators. Since the two main trucks are down we took dad's. This turned out to be good and not too good. I miss him dearly. Way too many memories for both of us. I know crying doesn't help this stuff but...

Maybe tomorrow will be better. This video is for Dad, Annie, Papa, Joe, Edna, Gerald, Keith, and The Old Man...

03-26-2010

I made it exactly 57 minutes until I woke up in extreme pain from my mouth and throat drying out. I just gargled with Miracle Mouth Wash, took some Morphine which I have to wait until this pain eases then go back to sleep. My taste bugs and tongue are inflamed so even the (Liquid) Morphine burns. I took about 17mgs which I average when I do take it between 10-17, seldom do I do 20mg. The liquid mixed with water is easier to swallow than a pill an can be cut easier to a lower dosage. A pill I would have to get my mouth and throat wet with water, then a Yoo-hoo, the use something that has a coated texture, I use Yoo-hoos to swallow. I do that every morning. I keep Yoo-hoos just for that purpose. That is how I take my pills unless it is with milk, it lessens the chance of getting choked. I should have said that sooner, it may help someone else with this junk.

More later........ That little prep afforded me to sleep until 6am and I have awaken with the left side hurting mildly and I can still hear and feel the little flap thing fluttering when I breathe. I'm still tired so I may sneak in a few more minutes.

More Later.....