06-14-2010

HBOT went well today. I spoke some with the dr about what I am seeing like my toenails that were corns are growing back nails, but he says HBOT isn't responsible for that happening. The neuropathy seems to be better after HBOT which he said that they did take some credit for that happening, but mostly the throat damage from the radiation. That is the part that still needs a lot of improvement.

Tomorrow we go to Rathfoot and I'm sure he will scope my throat again, which I don't mind at all. I will have the nurse numb both sides this time though, lol. I will ask him about the polyps and if he is planning to surgically remove them. I'll also ask him about the ears and the blood that sometimes comes out of the right ear and the referred pain. There is also still yet a knot under my chin that concerns me.

Panella comes the next day and I will once again demand the CAT Scan... I, We, need to know and it has been long enough. Is it clan or not. This may end up my last visit to him as grow weary of his lack of attention.

I worked outside for several hours today. The energy the HBOT gives is excellent, but I'll pay tomorrow.

06-13-2010

We went to the beach for 5 days and then worked getting the garden back in shape when we got home the next 2 days. Today though I was down flat for most of the day from overdoing it.

It was nice to get away fr a week but really there is no get away except for not doing treatments for a week, which was nice. It did however tell me that all I had known was now a memory at worse, a goal to achieve at best. We had to find a hat and finally found what looked like a Crocodile Dundee hat. That in conjunction with 100 block and buying an umbrella that was SPF rated at 100% seemed to work. I felt a little foolish and probably looked that way too going into the ocean with my hat and white neck as well as sitting cautiously under the umbrella with the same look on. Needless to say that my trips into the ocean were few, brief, and in shallow water.

The neuropathy seemed to get a little better, but I haven't a clue why. Walking out into the water seemed to present it's own challenge, especially after I went in far enough that I couldn't see my feet. I rose to the challenge though and didn't fall down I must have looked drunk.

The ocean combined with the sun has some kind of healing properties and usually throws the Non Hodgkin's Lymphoma almost into remission. I actually needed this trip and it would not hurt to do two each year. This is the first time since all this began that it is back under control. We've discussed maybe doing it again this year but it all depends on the oil spill. It was rumored there that it would strike Myrtle Beach sometime in July. If it does then it is safe to say that the healing properties of the ocean will be gone.

Traffic was heavy there yet all the shops and decent restaurants complained that business sales were slow. There was a lot of cars there from Alabama. We didn't get our regular room at the Caravel, they tried to put us in an ocean view after we paid for ocean front, we've stayed there the last 5 years and they do us like this, so we got a refund. We ended up at a quaint, lovely motel in North Myrtle Beach own by a man and his wife. The size was comparable but it was all 1 big room with 2 of the hardest beds I've ever seem. Wifi was not offered. It was however clean and the closest to the actual beach we have stayed at... pretty nice. It was a quiet beach too, plenty of room. The life guards didn't try to root out those with their own umbrella like a Myrtle Beach.

I was impressed to see however that nobody was shopping with BP stations, then shocked to see at home people were. We vote with our dollars and when we purchase from evil companies we say to them "it is ok with me". Whatever happened to boycotts? There should also be a McDonalds and Disney boycott for the poison glasses, along with no China made junk. Instead of just griping about an injustice we should show our strength. That oil could have been drilled from a surface, those glasses made in America and probably even the movie for that matter... but it wasn't. These companies are worth a fortune yet the spend fortunes everyday so yea, they need our money. One can't do it alone but like a bee hive (for we are many), we can stop this from happening again. If we wait too late though...

I go this week to see Rathfoot and Panella. I look forward to Rathfoot but I'm about over Panella. It may be time to move on. I'm also wondering on the HBOT tomorrow, man it's getting costly.

At the beach I reached a deep level of depression after a few days. We always walked along the beach in the evening, long peaceful, sometimes romantic walks. despite the improvement down there I wasn't able to. We would often get into races, but that wasn't to be either. As I watched others from the balcony at first I smiled which later turned into a frown. Will I ever get to do that again with my beautiful wife? Will we all three ever get to race again? If only these people knew how lucky they are...if only I had known how lucky I was.

It made me work like crazy in the garden the next two days only to be slammed down for it this morning. On the bright side, later in the evening I gave my bike a bath and went around the block on her. I'm ready whenever Denise is to ride. My God what that does for my soul.

I'm still paying for some of the foods I ate and especially what I drank,,, Mt Dew. The bottled water all has something in them that makes my mouth dry. If we do get to go again I'm either taking our well water or English Mountain water, they both seems pure with nothing added. The crunchy food was my call, and not a good one.

Now we are back to the same old same old. Like I had to explain to Denise though, I hurt here and I hurt there too so it is not like a vacation.

06-03-2010

HBOT went well today despite I didn't get to sleep until about 2:30 am from the pain in my feet. Actually I done ok for a while after HBOT except for the neuropathy. My voice goes back and forth from bad to very good... strange. The pain is at about 1 and stays there, but I still have the 25mg patch. I see Panella and Rathfoot next week and we're hoping for good news and a CAT scan. It would be nice to know if it is all gone or if we're chasing our tail.

My energy level dropped fast so I didn't get much done and the steps I seem to be granted were fewer today until the intense pain set in. It was a day though to get caught up on email, kinda.

06-02-2010

It has been a day today. I slept all the way to St Mary's after getting little sleep last night and fell asleep in the HBOT. I'm not sure what happened today, I awoke with little control over my body, shaking and having to have the hood pulled off for a little while to recover. It was weird. I have never lost control of my body as far as shaking or tremors goes. Luckily Chad got my hood off and within a few minutes I was recovered.

Today and tonight my neuropathy is raging, making me more of a cripple that someone who walks on their own power. My balance is still gone and I am in heavy fatigue still. The last few days I have spent more time either laying down and trying to get up than actually accomplishing anything. Me and Megan got the big tiller out but I wore down quickly after tilling just a small part around the cucumbers. Megan noticed the unsteady gate and I must have looked tired and kept telling me to stop and rest. The whole thing lasted about an hour and by then I had little choice but to take her advice. Within 30 minutes or less... I was asleep and slept until Denise came home. I've laid around ever since.

Last night was extremely stressful, undue stress and one which I will make sure that doesn't happen again. This may play or have played a part in today's but doesn't explain the last few days, hence my last post.

My voice came back for a day and even though it isn't good, it is better than it was. The pain in my throat has subsided and is at a manageable level while other parts are excruciating, mostly the feet. Not quite enough to do away with the patch just, yet but close. We're down to just body aches and this damn neuropathy now. I am so glad I got the handicapped plaque renewed... I'm needing it now. The fight is also in the feeling of hopelessness that this is all there is left in life. I would have rather died than to live like this.

06-01-2010

HBOT went hard today, chest pressure and nausea today. Tonight though no blood in the right ear as like last night so maybe the bleeding has stopped. I'm still having some pain from it though. I haven't mentioned it. I figure one throat and two ears... so I have a spare.

The neuropathy takes a break during the day but comes back in the evening to let me know it is still there and by nightfall, I am in misery. Hot baths see to effect it somewhat for a little while. I read about some kind of OTC drops to place on them to help tolerate the pain. I think I will try that.

The balance seems to be getting worse. Megan caught me twice today and kept me from falling. Once in the carport and once on the back sidewalk. I am lucky she was there. Megan has become my help, my extension of accomplishing things I once deemed small jobs.

My voice came back to me over the holiday but it didn't last long, it has stayed better than it has in a while.

Last night a storm took out the power so tonight I got on here to answer one email and post this. It is late.

There is a change inside of me, one in which I really don't care for. Those who have read this from the beginning have read some of the horrors that one faces, the Hell on earth that this stuff brings. Yet even with that, I cannot accurately describe it well enough for someone that hasn't underwent this to have empathy, sympathy maybe, just not empathy. I guess that is why two survivors, if they can be called that, talk more openly and freely. During that time one faces so, so very many things. The big issues we see and while we need help, even if we don't ask for it, we see them. It is the small issues though in which one doesn't see that causes falls. Ones that others see we are heading for yet remain silent to the person going through it. They often serve as a smaller thing themselves either knowing or no knowing, something to trip on.

There are those that shine out like stars for us guiding the way. Those that stand as silhouettes merely watching but seldom acting. Then there are those that simply add to the intensity of the pain. I'm not sure they always mean too. Those see us still breathing and think we are ok, we've made it because we're unhooked from all the wires while we attempt to regain what we were once....or just a part of what we once were. Ones ends up remembering who was what during it all and reconfigures the value or lack of value and bases others as they have based them.

05-29-2010

HBOT went well today and kind of fast. The pain in my throat was and has been pretty sever on the left side with the right side occasionally, reminding me it is still there. Me and Megan went out to the garden and tied the last of the strings for the runners in the green beans, but the pain eased only a little. We worked until the storm came in which was a relief, I was so tired, plus the gardens needed watered. I laid down on the couch and fell asleep about 4:30 and with the exception of brief moments and going to the bathroom, I didn't wake up until I heard the phone ringing this morning at about 10:30.

It took until 2:00pm until me and Denise went outside to work, it took that long to get going. Once I started though it was like the pain slowly went away and tonight, even though I sound bad, the pain is at a halt. There is a constant hissing and ringing in both ears, but nothing really bad though. I'm wiped out again and awake only long enough to log this in.

05-27-2010

  I've had many questions answered this week so it has been an informative week, but so many still remain. HBOT went well today, I skipped the Prednisone and Sipro until after the treatment. John told me yesterday that Hyperbaric Oxygen Therapy sped up the body's system and that may have caused me to get sick... it worked. I just changed the time I took it. My vision changing is part of the HBOT and hopefully will return to normal. Like many side effects in I have acquired throughout Chemo, radiation, and now this one, it isn't a constant thing. It may be and ok all day, maybe even for days, but usually not. It isn't a constant and it gives no warning of when it is starting to fail. It just does. 


  Tonight a major headache. I use to never get headaches but they are pretty frequent these days. From what I read on the sinus polyps that is one of the things they cause, along with dizziness. Tonight Denise explained how they formed according to Dr Rathfoot, I didn't remember what he said. I wonder if the traumas done weren't related to the swelling and that affected the swallowing. I still, when I swallow. It still takes concentration and a spot of luck as to which way things go. Sometimes when I swallow it goes right and that is getting better each day. Sometimes it heads back up in my nose and sometimes into my airways. Some still get stuck frequently and I have learned to do a short burst or cough... just a quieter one. Where most people freak out, I done the same, when things go wrong it has become such a common occurrence that I remain calm now. It is pretty much expected with any food or drink. I can almost guess by the texture and thickness if it is going to be a pain and which way if any it will travel. God knows I had enough junk come out of my nose when I took chemo or when I dehydrated during radiation while throwing up.  I really hope the medication works, I'm really not wanting to have surgery but if that is what it would take then so be it... as long as the cancer is gone. This also causes a constant drip or running in the back of my throat which would explain the rawness.


  It would also appear that I am granted a certain number of steps each day to take. I actually start out not too bad then each evening the neuropathy increases to the level that walking across the house or even applying my weight bring excruciating pain. I have learned that wearing socks all the time helps a little, especially keeping my feet warm. My hands are slowly returning back. I guess we gotta start somewhere, lol. Sally and I talk every night and she has neuropathy for quite some time now. Like mine, hers is at a fluctuating level, not a constant. There has to be a common thing that triggers it.

  There is a part of me that once again changed throughout all of this. I will still rate the heart attack as the most pain at a given time but the treatments for and the actual pyriform sinus cancer (throat cancer) has to get the ribbon for pain. The heart attack will soon end one way or the other, it doesn't drag on and on. This has been a living Hell on earth and seems to never end, yet it will one day one way or the other. After the heart attack I knew what comes next and the fear of death was taken away. As a good friend once said (PMH Atwater), people pray that their loved ones will not die or come back, yet when we do, we are rewired. This isn't always a good thing and what people get is the new updated version back. It is however a good version, one that doesn't really fit here, but not ready for there either.

  The cancer and all it's treatments has had the reverse effect in many ways. I find I am short tempered, something I detest in a person. Even though I still am me and am physically alive there is a part of me that is already dead. There is something about living in that much pain for so long, being that dependent of so many people, and not knowing when if indeed it will end that one changes inside. The looks with faces that smile yet hold back the tears when they look at what is left of you or look and judge you thinking you brought it upon yourself. I have been fortunate with having family and most of the medical staffs that were compassionate and worked hard for me to go through this. There have been a few though that felt nothing or if anything, superiority and been bullies. Thank God they were few. Dad didn't quite have it that lucky until he hit Knoxville. Those that haven't been so decent I look at and smile knowing they will answer to God for that and take it the best way I can.


  I can't see things like I use to and wonder, sometimes laughing at and sometimes feeling sorry for most I see. People who wrap themselves up in their job or company and think that is actually getting them somewhere. A huge part of me came back looking at things like that and now with this it has intensified. I sat and looked around the other day, man the things I have built. The things I have repaired. The things I have acquired. The key word is things, that is all they are, just things. They wear with time and age with time slowly returning back to where they come from unless one works their butt off to make them last and even then it is a struggle to make them them last just a bit longer, maybe until you die. I went to an auction the other weekend where all he things the people had were sold to people, people collecting things that would one day be sold, just as those people had done.

   Being in real estate I looked at many houses... how small they were back years ago, how plain and different. Houses now-a-days are massive in comparison and it is funny but true happiness has went the other direction. Family and friends meant a lot. People had time to rest, even though they worked hard, they still had time. Aspirations of true wealth were not measured by things or job titles, rather by family time and joy. Jobs were a way to make money and one job is just an important as the other as long as the person was happy doing that job. People are so consumed with what is in fashion, what make-up to wear, car to drive, biggest house with the finest linens and furniture. Most make it to church on time and get their I'm doing great things going on inside me. Almost all in debt themselves heavily with 30 year mortgages, new cars, new medicines/// but are they truly happy? I was there once. The employer sees his employees in debt and instantly know that this is a man or woman ready to serve the company and place them first.The TV gives them an idea just what they want and want to be. But it is all an illusion, an illusion of track one in.

  I have feelings of despair that I cannot do what I once did yet with this rest time that my body makes me take I have time to reflect and prioritize what is real and what has true value and meaning. Then I look at these who aren't bad people, just misguided people. I would venture to say about 90%. The lies are believable, these aren't stupid people for the most part, just misguided. Working with Fannie Mae for a while and some banks one comes to the realism that it is full of these stressed, sad, little people who bleed for their company. the question is though, would the company bleed for them? While people may make big money, have power and authority granted them-- what does it really prosper them, nothing. The biggest questions should be how will God view my life? Will God be that same ti me as I was to those I was in charge of? There are no percentages or excuses accepted there.

  We watch shows like Hell's Kitchen, Trump, and so, so many more where people want to get ahead, so much so they allow a bully to take them there? We have been led to believe that the money money, the more honor. The more power, the more prestige. The more pride we have the more we have become. The more money we have the more fancy things like cars and big houses and cars must mean we have made it. Somehow I just can't believe the lies anymore. These are all just things. Worse of all these are things Jesus warned us about. Many churches play this same game. While physically I can't do it even more, emotionally, spiritually, mentally, I just can't continue to believe the lies let loose upon this earth in this time. Covet, lust, greed, hoarding, pride... no matter how you look at it, that is what it is. They are endorsed by words that sound good like Free Market, when there is actually nothing free about it. Slogans like it's nothing personal ring out yet... it is personal, it is personal to God.

   I think going through this Hell has been the worse best thing of my life for it may very well save me from Hell one day. God doesn't want people like Free Market people when their job swings on a pendulum, full of stress and pride. God wants humble people, caring people, people content to do what job He created them too do. This cancer has made me see, even if it costs my physical life, for I was one of those. While I pray for recovery I also pray that if this has placed me where I needed to be, closer to what He wants, it will be the right time for me to go home. This life here on this planet is not what we were created to do forever, and it is so short, but rather to prepare us for the day we account for the things we said, felt, acted to and reacted to, and if we done it well. I can't answer for you no more than you can answer for me. All I can do is say I am sorry and change, and this has changed me dramatically.

   I pray the next time you are driving you remember this by not being a bully. I pray that you learn to be humble. I pray that you look at who is your god. Then I pray you live accordingly by knowing the difference between earthly things and things that have true worth. They are all around you and they are freely given you.