07-30-2010

It's almost 4am and I woke up. Denise had to put me to be last night, not sure what went wrong. I was typing an email to Sally when things started spinning and I became totally disoriented. I got back up, intending to send the email, I am still not sure if I sent it or what I typed. That came out of nowhere and has to be a first. I had been hurting on the right side of my head earlier that night about the lower temple area. Right now my face is still numb. I didn't really do much yesterday so I wonder what was that? There is still a slight pain there, it feels like I got hit and it is sore. Even my gums are numb. My computer is exactly where I left it with the email going and all the windows I was watching open. Usually when the fatigue spells come I have time to react, this whatever it was I had no warning and no time to react, it just came. I hope that is a singular event. Maybe just too much TV, I had watched a few shows the last couple of days, lol. the pain is growing gain in intensity while I type this so I think I will lay back down.

7-27-2010

Well the appointment with Rathfoot went ok. I am done HBOT but he said I may need it again before this thing is done. I expressed what had happened there and if I did need it, try the single chamber. Something strange happened there. But I'm glad it is over. I will miss it though and highly recommend Hyperbaric Oxygen Therapy, it works.

The cartilage in my throat is healing, slowly, but healing. My larynx is now visible and moves one way, it just needs to move the other too. I asked about the hissing sounds and if they were related to the swelling. Nope, chemo, another perk to using that. It isn't all the time but a great deal of time when TV, people, radio, or some noise is on it starts. It sounds just like letting the air out of a tire and your head is right at the valve stem. No pain, just noise. The other noise I can't describe to you. To replace the HBOT he prescribed me another pill to take. I now take 10 pills 1st thing every morning, 2 mid day, and I think 5 at night, plus my vitamins and herbs.

I had another black out type spell coming home, the reason I don't drive much or far. I didn't get anything done today from the fatigue.

Charlie got to come home after getting 2 stints. St Mary's done an excellent job and he is doing great.

I looked again at the boat i just bought yesterday, lol. I am finding out the hard way that material to restore a boat isn't as easy to find as cars are, neither is information on it.

So be another day...

7-26-2010

Lord what a night, no sleep at all. Denise said it was the predisone, that I had took it too late. Saturday night I like to not have went to sleep, started in bed and woke up freezing but soaking wet on the couch about 7am. Personally I think small elves carried me in there and bathed me. Now here it is Monday and I wish they'd have knocked me out, lol. I believe that I sweated out a lot of the infection though, other than tired I feel pretty good.

I didn't go again to HBOT and I will not go until I know the infection is gone and I can clear my ears for the dive. I go to Dr Rathfoot tomorrow for a check up, man I hope my sinuses are clear, if not they will give you stuff that will. Stinks but not too bad. I got only two visits in last week. I am hoping that I am done with the treatment. It isn't bad but you never know what mood the doc will show up and that causes stress. I have a problem with people that start a sentence screams look you G.D. S.O.B., then it gets worse. Its like Dr Jekyll and Mr Hyde and the way I figured it so far is that he knows that the people there are at his mercy and I'm sure that God is keeping score, I know I am. That kind of stress placed can reverse or at least detract from the benefit. I should have been doing Vit C. I have read that your body uses more under stress. I guess the law of averages just caught up with me. Look at the excellent doctors I have had so far plus the ones that read this. The has to be a bad apple in the bunch somewhere, sometime. So I really can't complain, I have been blessed.


Its sad really that someone has to be that way. Like the ones before though, I have remained silent on here and at the hospital... but it is hard. It is a shame really, Hyperbaric Oxygen Therapy is such a great tool. One of the few "conventional medicines" I think shows greatness. I have faith in it. I have not only experienced what it can do but saw others benefit from it. Over the course I have remained silent on this about it, I had no other choice. Usually Chad or John dive and both are compassionate and caring. Credits to their profession. I actually don't see how caregivers keep a heart as much as they see, and some don't, but these do.

I am slowly starting back my herbs and vitamins now, being careful as I don't get choked on them. It is getting easier. I still plan if all goes well to restart all the herbs plus the one that I am sorta leary of, the B-17. A friend on CC turned me onto a website that is pretty good. There is a therapy there that bears looking into, I've read about it over the years on other sites. I plan to look it over. It is at http://doctoryourself.com. Not that I will not walk away from this care but add to it. I have had too many kin folk die of cancer after they thought it was gone, too many. If mine is gone, I will still go through for prevention.

7-23-2010

It has been a long day, a painful one. I did finally get the oil changed in the truck and the cucumbers and some tomatoes picked. Rather than taking them to everybody I had them come and get it. I did get the chance to browse the web and chat with my friends at ConCen.

I should be down to one of the last few patches and so I am taking the advice of my friend Kim. I will wear these last 2 patches an extended day each and follow-up with pills for a few days then my system should be weaned. There is a lot of pain that shows, more than I thought was there. Not that I'm into pain but before I ate and swallowed whatever and whenever with occasional break through pain, thing is, it masked far too much pain. That allowed me to eat and do whatever and that ain't a good thing. It isn't the mountains that wears one down, it is the hills. I knew when I done really bad but not when I done bad... I do now.

My neck is hurting on the outside more than the inside after a few minutes unprotected in the sun. The sun has become my enemy with this and yet is my friend with the Non Hodgkin's Lymphoma. Speaking of which, the ones that read this please remember my good friend Sally tonight who is hurting and say a prayer for her. She is one of the sweetest, smartest, strongest people I have had the honor of calling friend. If one reads on CTCL it looks like a walk in the park, but in reality it is far, far from that. I love on one board when someone says they are hurting and the doctors say they are not. It is by the Grace from God that the roles aren't changed.

I finally got some meds for my cold today that Dr Rathfoot called in. It has taken from last Friday til now, but at least I have them. I've suffered some with this cold but this is life, I've seen a whole lot worse times and I'm sure I will again. I have an appointment with him next week and I pray that he will say good job. I grow tired of this battle.

07-22-2010

I still have some kind of bug I caught off mom so I haven't been to the HBOT treatments since Wed. I feel like crap, just drained on strength, head stopped up and ache all over. It reminds me a little of Chemo but not the bad days, the good ones, that depresses me a lot. So I have once again been inside the house doing nothing and sleeping on and off. Since last Friday we have tried to get a hold of Rathfoot but to no success. This is the first time he has dropped the ball. Tomorrow will be a week and still nothing as this stuff gets worse and trys to go on down in my respiratory track.

I am so over being helpless in so many areas, I would love my independence back. Next month will make a year for this to be going on. I have had enough already, enough for 2 lifetimes.

07-21-2010

I stayed home today due to an infection in my sinuses and ears, both were stopped up and I felt like crap. Tomorrow I will stay home again just to make sure this stuff leaves even though I feel a little better tonight.

My right shoulder is acting up, I think the tear I did 20 years ago has torn again, either that or I've injured it again. I will wait until all this calms down and then maybe go for a shot into the shoulder and see if that helps.

My neuropathy gave me a fit today even though I kept off my feet and kept them elevated... strange. My throat seemed a little less painful today after I woke up, but then again I didn't talk much today. It still isn't too bad. I think if the saliva glands would start to work and this sinus thing would quit, and the reflux stop I might have a chance to have a voice.

August 9 is still in the back of my mind though. I look forward to it yet at the same time I can wait. If they give me the all clear I'm buying a boat, a cheap fishing boat... and I mean cheap, lol.

For My Family and Friends

07-20-2010

   I awoke decent today but in a lot of pain. I think I may be getting mom's cold and just my luck, it is in the respiratory and sinus region. For the last few days I've felt rough. The hissing, like an airline is leaking, and it is loud has came back. HBOT was one of the hardest yet, I was already about to throw up before I got there and it got worse as we pressurized. Thank God it was a good movie, Cinderella Man. I would not have watched it on my own but it turned out to be an excellent movie, one of the best ones I have seen and it helped me to focus. I almost asked several times to come out.

  Me and Charlie ate and discussed his upcoming heart cath, I think I filled him in pretty well, had a bunch of those, lol. Nobody was happy that I drove myself down yesterday, but I made it. The Chemo has left me where I fall asleep, almost like pass out easily, but I know the warning signs. He will be absent when he has his heart cath and I plan to drive myself then. far to long have I been a burden.

  I slept today after I got home and tonight I will have no problem sleeping more. Again I meant to change the oil in the truck and again it didn't happen, lol. Maybe tomorrow. My throat is so tight inside tonight it is hard to breathe and enough break through pain I resorted to about 10mg of Morphine. My God that sounds like a lot yet it barely eases it off. I think I will be in for a Hell of a ride when the patches come off.

  I still get frustrated that I cannot do what I want and what I once did. How is all this junk suppose to get done? How did I do it all before? I failed at doing all the gardens, I was in hopes that I could do enough so that if this is my last season everybody would have plenty of food stored. One thing is for sure, they all have eaten Tomatoes and Cucumbers till they were full. At least they will have enough seed for net year and some to share if I am not here. We will find out August 12th if it is gone or not. I pray it is for I could not physically, mentally, or emotionally withstand any more. If it ain't, I pray I go fast.

07-18-2010

  I woke up this morning about 10am, took the barrage of pills I have to take, then went right back to bed. I didn't get up again until 5pm. I had planned to pick the beans, tomatoes, then change the oil in my truck...didn't happen. Mom has a cold and I may be getting a touch of it. I ache all over.

  My right shoulder is going out. I tore it about 20 years ago and it healed, maybe I built up muscles to compensate for it like I did my left. When I woke up both times my mouth was covered over with something that felt like glue but tastes horrible. It takes forever to get that junk out and then getting it out of my throat is almost impossible and painful. Afterward though it feels better. 

07-16-2010

  The extra Morphine afforded me some extra sleep last night but today HBOT was hard to do again. I'm not sure why but I keep thinking the Tea from Hardees. Tea has it's ups and downs but over the months I have drank so much water that I long for something with some kind of flavor and carbonated drinks and OJ aren't the answer.

  Tonight though I don't need anything extra for pain, all day it has went no higher than level 2. I know there is swelling inside though, the hissing sound is back in my left ear. That means I am swelled up enough that pressure is being placed on the nerve. It is a loud hissing sound, so loud the first time I heard it I thought we had punctured a tire.

  I bragged on the Non Hodgkin's Lymphoma a bit too soon, itssss baccckkkk, lol. (From a movie). My feet and ankles plus a new patch on my knee. The knee ain't so bad but the ankle is painful and the feet override the neuropathy. How can that be? Numb yet painful. It is however a pain that I need nothing for as for 5 years now it has been there most of the time. We can get use to the strangest things, if indeed I am use to it.

  I think I've a cold now that hopefully will not blossom into anything more than that. My voice is back to where it was and the little chucks of whatever that hard stuff is comes up. I can swallow decent still but I have to get it back out of my nose, talk about a weird feeling. It is when it goes that way that I think is the hardest because obliviously it can't stay there and dislodging it is hard to do without making it head down the airway. Of all the ways for it to lodge that is the hardest to get loose.

  I attempted to get some garden work or even something, anything, done outside but it just didn't happen... too hot. I did however manage to spend money, lol. I did listen to something on the radio that I will place a link to. This one is unusual for me to do. The real message starts a bit after the 3 minute mark and boy did it strike a nerve. Listen to this message... especially if you are going through a hardship. It will resonate with you. It is at :  http://www.davidjeremiah.org/site/radio_player.aspx?id=169

07-14-2010

  It has been a not so good day today. I got to feeling a little bad in HBOT again today. The Colonel got very sick, but he wanted to stay.

  I laid around today and only briefly went outside. I did eventually pick a bushel of Turkey Crawl Beans. I am  not impressed with what I got. Many of those will be shellies so they will be used for next year's crop, if we do.


I also stayed, but I passed out from time to dime. The left ear is developing a hisss sound. My bones hurt today like they do in the fall. That could be the Lymes tick aftermath though. No fevel, no cough now. The choking has eturned along with strabge sounds. Tumor or just hasn't had enough time yet. 

7-13-2010

  HBOT went well today but we lost the new guy until he can be checked out. Still no Colonel... tomorrow perhaps. I got a little nauseous today but it slowly wet away towards the end of the session, no more Polish sausage and Tea, lol.

  After we came back I actually didn't do much of anything. It rained again today, thank God. Too late for the green beans but there is still time for the rest of the garden. I've played on the web today and enjoyed going back to ConCen and learning. I am tired but not as bad, especially when one considers I didn't sleep much last night. I'd say maybe 3 hours all together, but not at one time.

  Tomorrow I have to get Megan's stuff straightened out. Paperwork, yuk.

  Tonight my throat hurts but I've managed it until close to bedtime when I took a Lortab to deaden it. I discovered Sunday that by adding a 4th pill for the neuropathy it helped dramatically by accident. I couldn't remember if I had taken the second dose so I took another, later I remembered both doses. The loss of balance is just too much in intensity for it to be worth it. I can chose between pain and walking in pain, or little pain and not being able to walk. I chose the walking with more pain one.

  I've had a lot of body aches and arthritis pain. It is like fall is coming. Both shoulders, my knees, ankles, and back just ache and the shoulders are freezing into place. I'm not sure if this is where these headaches are coming from, it could be all the politicians on TV, lol. The Lymes disease left arthritis but it usually ain't that bad. Old injuries from UPS are by far the worse. Still, except for the changing of seasons, it usually don't hurt as bad.       

7-12-2010

  My posting are spacing out a bit as I hopefully get better. I still battle with the neuropathy day to day. I start out ok but by the end of each day I am back to bad. For whatever reason I stay tired, more so than usual. I am back to just going out, almost like passing out.  The chemo brain fog thing seems to be increasing. God how I hate that.

The growth my fingernails experienced has stopped. Not sure what that means if anything. The ridges where the stopped growth during chemo show out now.

 Since I have went down to a 12mg patch I hurt like Hell at times in the left side of my throat. Funny, the tumor was on the right side. I have began once again using the stomach pills prescribed (name escapes me) but it is sort of working. The time I got sick and threw up in HBOT must have been just dumb timing and a bug.

  The HBOT team gave me a 25.oo Shoney's gift certificate for my birthday. They shouldn't have but it was very nice of them. The doc has had shoulder surgery and so we pray for his speedy recovery. We got a new guy in today that has had throat cancer last year. He had neck surgery and 25 radiation treatments but no chemo. He is having teeth pulled from his radiation 2 years ago and needs the Hyperbaric Oxygen treatments before and after. The Colonel hasn't returned yet. 

7-8-2010

http://www.youtube.com/watch?v=w4QM_RNfk4M or 



  Well I made it to 50. It sure didn't look like it was going to happen, lol. I started out with HBOT which went ok today. I had some ear trouble which was unusual. Good movie though. Charlie bought me lunch for my birthday.

  We came home and I picked the cucumbers, divided them out and delivered them and later picked tomatoes and gave them out too. I played with the metal detector that Denise & Megan got me, man this thing is cool. It is complicated though. We ate birthday cake, all of my girls and grandkids were here. Denise bought me an Iron Man cake and said I was Iron Man after what all I have went through. If I am then the credit belongs to God and those around me and those who have prayed for me.

  No blood in the bowels today so maybe it was just a fluke.

  Today I am 50 years old and God has blessed me with the company of great family, friends, and medical people. There is nothing else one could ask for.  

7-7-10

  HBOT went a bit shaky today. I got just a little nauseous. It may have been the Hardee's sausage biscuit but I am leaning towards the Tea. I may try water but if I do I will bring my own. I cannot stand chlorine and fluoride in my drinking water... actually any water. I'll do the Jelly Biscuit tomorrow. It can be my birthday breakfast, lol. Then again, I started the day having to take something for break through pain. It gets so old. Dr downing is worried about hurting for a long time after his upcoming shoulder surgery and if it hurts like mine did he is justified for doing so. Throat cancer and the treatments are however times ten that pain. I smiled and said welcome to my world. I feel as though I have lived in Hell for almost a year just from this and the shoulder still rages itself. Thank God it isn't the real Hell for it never ends. One day this will end and I will be better, either here or there... no matter.

  The heat was bad again and about all I done was to water the plants, gather cucumbers and tomatoes and distribute them. I come in then. I read and played on the web, ok, I read on the web, lol. I also ordered Garlic since ours didn't do well. We will plant some of ours but we need more. I went back online to ConCen to visit my friends, more like, extended family. Rather than watch the horse and pony TV show news I read it, and that is one of the places I go, plus the people are great.  

  I am still passing blood through my bowels, bright red blood. I haven't a clue why nor do I really want to know. I see too many doctors already.

  We got a letter from National Geographic in New Zealand  thanking us for the interview. They sent two, one for Denise and one for me. They said they will tell us when the show Beyond and back will air and when we will be on it. Thank you Janice Finn for the lovely letter and the opportunity and honor to share our story. Thanks also to the crew that done the work on it.

  If I awake tomorrow I will have made it to 50. That is 1/2 a century old! No wonder I'm tired, lol.  

07-06-2010

  Today I went back to HBOT. The Colonel wasn't there again, he is still ill. We got a new person in today, his foot exploded. He is a diabetic. HBOT went well, a bit long but then again they had to go over what to do with the new guy. Funny, it is now second nature to me, all the things we do each day. Popping the ears, wearing the hoods, placing the cushions, the water... it is all too familiar. downing was in rare form again today, Gary set him off again. When people talk at me and get in my personal space I thank God that Lewis Byrd trained me to stand there and take it. Picture the Marine Sargent in the movie "Full Metal Jacket". Applicable in that condition but not this one. Perhaps that is why Jesus said "Physician Heal Thyself".

   My hair is still curly and has grow slower than I'd like but it is growing, I still don't need a haircut. Denise still hates my beard, lol. My fingernails and toenails are slowly growing the rings out of them. I am told that Chemo even stops your nail growth and that is what caused it. My skin is back dark again but I still have to wear sunblock on my neck plus a big hat.

 The neuropathy is an anybody's guess as to how bad it hurts and when it hurts... but it is for sure it will. Usually it in later in the day when it gets bad but occasionally it starts out that way. I would imagine that another dose added each day would help with the pain but it also kills my balance even more. The current level of pain is tolerable until it gets wound up and the balance lost I can compromise for as far as walking. I did discover that I cannot stand for too long.

   The energy level after HBOT is exhilarating most days but short lived. Until this oppressive heat set in I was able to get some things done. In the heat though I cannot breathe, so I am confined to only short burst outside. Most of the people I know who have had throat or mouth radiation say the same thing. I still hit these walls, we all hit them only this is a hard wall and the second wind never comes.

   My strength is picking up some, actually quite well. Unfortunately so is my weight. While I have grown a garden I really don't like anything except the green beans and melons, everything else is like by everybody else... I just like growing one.

  My voice still sounds like "The Godfather", lol, but it beats "Sling Blade". My throat still hurts, sometimes in a way I have to take something for breakout pain, sometimes not. The thing is though... sometimes not, something that wasn't just a few months ago. I have pains that my body send I would imagine from the Chemo or all the abuse this treatment has done but it isn't nothing that I can't live with.

  Going to the beach always clears up my NHL and so that part is normal, thing is, it is clearer than ever before and staying clear. I am not sure but this HBOT could work and indeed seems to work on CTCL. Oxygen kills cancer so I see no reason why not.

  I turned in my application for retirement to UPS/IBT to get it started. I hope I get back to where I was but somehow I doubt that will happen. we are 1 month away from having the scan run to see if I am clean and if my lymph nodes are clear.
 

7-1-2010

Happy Birthday Misty April Henry!!!  Big 31.

  HBOT went well today but the colonel was awol, he got sick yesterday and hopefully he is ok.

  Me and Charlie ate a LJS... big mistake, lol. But we thought we'd try something new.

Megan and me watched a movie then I got up and picked about 2 bushels of green beans, greasyback and 1/2 white runners. Megan is breaking them and tomorrow Denise will can them. The rest of the beans are spotty and not full. Off to be again. My pain level has dropped to an ok level, leg cramps hurt though.