Friday, December 19, 2014

12-19-2014 - The Plan on HBOT

  Well they wanted me to start this week but I talked them into waiting until after Christmas. I start the 29th. The Insurance company would not approve 60 visits, they only approved 30, and partially cover the expense. My out of pocket for 30 will be at least 1100.00. It could be worse, they said Blue Cross Blue Shield has decided that they would not approve the treatment. I still have a hard time knowing that an Insurance company can override a doctor. There is something terrible wrong with that. When Insurance corporation administer a person's treatments, with no experience, no accountability, and no compassion... something is wrong. Apparently Blue Cross/Blue Shield has went the way of Liberty Mutual, straight down. All I can say is dress light because one day you will end up in a very hot place, lets say it will be Hell. While they play with people's lives, God watches and keeps score.

  I put it off until after Christmas. Denise will be off work and we can get some things done around here. It isn't for many reasons but it is for a main reason, that we work together and spend time together. This month made 26 years we've known each other and in 3 months will make 26 years we've been married. Yep, we married the 3rd month and despite obstacles, we're still together. Time, jobs, events, and tribulations have changed us both so I believe it is good that we spend time together. We are different in a lot of ways but the same in the ways that matter, so we enhance and embrace our differences while holding tight to the things we hold similar. I wondered today just how risky a move delaying treatment is when me and Megan went to Hardees and I could hardly swallow. I'm use to stuff getting stuck in my throat. Where once I freaked now it is seldom that I freak out.  This year we celebrate without 2, my mom and Denise's dad, but where they are is perfect. That helps knowing that but we still miss them.

  Sherry went over everything with me. They have people who come and get the patients where once family and friends had to drive them. They do not want people driving after a treatment for a while in case something goes wrong. Two hours is a long time for the drivers to set and wait. One thing I didn't know, we can't wear our dentures inside it, she said it would crush them. I still remember the walls buckling as it pressurizes. There is a TV inside, encased so that it will not be effected by the pressure. You can watch a movie but you can't actually hear it due to the noise. I think we can bring a book too. It will give me a chance to catch up on Rob Skiba's books plus a few more. I'm hoping to get on the first dive and to do this without medicine to relax me. I'm claustrophobic so being in there kind of freaks me out. They have an ENT that dives with the people in case of emergency. They can see and hear everybody on the dive and watch for anything that may possibly go wrong. Any hint of it and they contact the ENT on board to check out the person who looks questionable.

  The last time I was there I done 90 dives and it was what started stopping the damage from the radiation. I saw people who were diabetic and about to lose a limb be healed and get to keep that limb. Radiation does strange stuff to the bones and one lady six years after her radiation had a tooth pulled and lost part of her jaw bone. They done reconstructive surgery which was also going bad until she started the Hyperbaric Oxygen Therapy. She was saved and her jaw bone that she had left was healed plus the transplanted bone grafter well. You have a few possible side effects, but nothing compared to pills.        

Friday, December 12, 2014

12-12-2014 The Meeting

  Me and Denise went to Tennova (formally St Mary's) hospital this morning to meet and be set up for the HBOT (Hyperbaric Oxygen) Therapy. So now we wait on the Insurance company to approve it. Something is terribly wrong in the country when Insurance corporations can superseded doctors. Then again, our health system is broken... thank you big pharma for that. We did learn that Blue Cross Blue Shield has decided they would not pay for HBOT, thank God I no longer have them. They decided there was no benefit. Perhaps the ones that I saw keep their legs, toes, feet, jaw bones, might disagree with that. That I saw first hand when I done the treatments before.

  So anyway, the new doctor was super nice, down to earth, and extremely smart. Two of the old cast and crew were still there and I met a lady who is one of the new ENTs that "dive" with the team. There is not a lot of possible side effects, blood clots, loss of hearing, loss of eye sight, stoke, and heart attack, sickness from O2. If that seems strange just look at the disclaimer on regular TV medicine ads or read the paper that comes along with a script. Using one's head and following the rules make this pretty safe.

  So my treatment play will be 60 treatments then a revaluation. The goal will be to stop and perhaps reverse the cartridge, vascular, and muscle damage the radiation left behind that is still ongoing. If this works resection of my voice box and throat will be off the table, but as far as I'm concerned it already is. I'm not looking forward to it but something has to give. They even provide transportation to and from, still it is a long trip. They want me to do treatments 6 times a week, said it seemed to work better, so I will comply. I am praying that it also gets my Non Hodgkin's Lymphoma back in line. That is another thing that has to give. It has gone body wide and in the painful stage, like a really bad burn yet at the same time itches like poison oak. I still have my Narrow Band UVB machine (NBUVB), but side effect... cancer. Imagine that, a cancer treatment that causes another cancer, lol. You can't make this stuff up, it is just too weird.     

Wednesday, December 10, 2014

12-10-2014 Follow-Up - Not great

  We went Monday for another follow-up with Dr. Rathfoot. I told him how sorry we were about his wife and mom. He said he knew I had lost mom this year and I told him about Denise's dad. He hugged her and the me and I told him he and his family were in our prayers, and I remember him every night. He is such a good man. I respect him as a man and as a doctor.

  He had a doctor in training following him. He scoped my nose and then let the man in training look in the scope. If that man follows Dr Rathfoot and does as he does he will be a great doctor. The guy seemed to know what he was looking at, either that or just agreed, lol. The last few times haven't went as well as planned, each one a little worse, but I remained optimistic. I know things are falling apart and I could feel it pain and all. Some things I guess we just go into denial with, but eventually though we run we can't hide from what is there. Dr Rathfoot was rather blunt with me, which I do appreciate. Usually Denise hears things that I don't and understands things I don't, and she corrects me on our trip back. This time, she didn't.

  The area on the side opposite where the tumor was has still major damage and my vocal chords and pretty much the rest of the throat is dying. Breathing, sleeping, and swallowing have gotten increasingly harder each week. I am use to food going the wrong way down or even going up my nose, but lately it just gets stuck and it is hard to get unstuck. Many people panic and I use to but slowly over time one learns to remain calm as long as possible. Go figure, somehow I thought it would not be noticeable when he looked, lol. He asked how I was doing and I said good, but looked over at Denise and she was shaking her head.

  He discussed another surgery, which I knew he said I would probably end up having at least one more in the future, so I wasn't shocked. Then the bomb came. He said he could probably do another surgery and buy me some time, but it would not correct it permanently, and was on a temporary patch. That wasn't the bomb yet, it was dropped when he said he wasn't sure that I could have it done without ending up with a Trach. When they operate the put a tube down your throat and a machine breathes for you and as soon as it is done and you appear to be breathing on your own they pull it out. The only other option was to go to HBOT (Hyperbaric Oxygen Therapy). I don't know how many treatments it will take and I dread the drive to Knoxville to do them. I figured maybe like after Christmas it would start, but I go Friday to see the doctor and probably get fitted for the hood and clothes, plus a physical. I got lucky there, I just had a stress test and stuff ran about a month ago. It is moving fast so I guess he must have saw what I have felt.

  I will go to what was St Mary's, now Tennova, where it looks like 1/2 a Submarine is there. I'm claustrophobic so the coffin sized lay down in one is out. It worked before and would have probably worked completely but I quit before I was done. The doctor they had was a nutcase and a complete A hole. They say this new doctor is nice... we will see. I still remember the hateful one getting pissed off and trying to knock everybody in there out adding pressure. 2 of us stayed alert... semi, and we watched the rest go down one by one. One of the guys on the outside made him stop, not sure what would have happened if he had continued. That was the straw that broke the Camel's back though. This is it though, my last resort once again. I think we all draw a line in the sand and mine is having my voice box cut out and breathing through a hole. It is not that I don't want to live but I want to live with some quality and with no burden on those I love. I should fear death but I don't. I figure I will be here as long as God wants, then I will go. My chances increase at night while I sleep so I always make peace with Him every night, just in case. Death comes to us all eventually and after that, life forever, and I'm counting on a lot of Grace for that one. It is well.        

Monday, November 24, 2014

Glenn

  My father-in-law, Glenn Shaver died Thursday. I haven't written any of it most due to not knowing what to say since Denise reads this blog. This blog has acted like my pain medicine for many years now, a place I can say that which I usually don't speak along with that I do speak, and that seems to help lift the pain. Whatever I write I know will cause more pain for Denise, and that I do not want to do. Today is the day for the funeral and the burial is tomorrow. So this is mainly for Denise:

  I am so sorry for you all for Glenn, yet I rejoice for him. Actually his passing hurt me too, nothing on the scale as you, your mom, and sister. You probably noticed that I haven't spoken a word of his death on the blog, but that was mostly because I want to cause you no more pain and strife than you already have. You see, whatever part of me is left, I still feel the need to protect you. This time though I cannot. The worse thing is there are no words nor actions I can do to stop the pain, I can't seem to do that myself now after 9 months since mom, so I know I am powerless, but I do what I can do. It isn't much I know, like throwing a rock in the Grand Canyon and trying to fill it up.

  I have been blessed to have been allowed to be within the company of great people and your dad goes to the top of that list. I have known but only what I would call Godly men and that list I believe him to be at the top. I do not say that because he was a Deacon or Sunday School Teacher and Administrator, I know plenty of fake ones that do exactly what he did... talk. I say that because of what I have seen this 26 years I have known him. There was no false anything to this man, he lived what he taught. There are plenty of people who speak one way yet walk another way but few are they that lead by example. He did. Though I am not Jesus so I cannot judge who goes to Heaven and who does not, I am sure what he is one of God's now, safe in His hands and receiving his rewards.

  In 26 years I do not remember him saying a curse word, never seen his temper, never heard him talk about anybody nor judge anybody... how does one do that, I have no idea. While keeping a realistic perspective, he also both had and taught hope for a person. I never heard him "preach" to anybody nor back away from being asked a question. I never saw pride in his nature yet he took pride in himself, his family, and the world in general giving the glory and source to God rather than accept any praise for himself. For about the last 10 years his body failed him and though his mind remained in tact, his spirit was never compromised. I never heard him complain or ask why, I never seen any anger in his condition. The only person I know that done this was Papa, I think dad did that too. Papa, like your dad, lived his life and became an example. No words were ever needed.

   You may or may not have seen different growing up, but I bet you didn't. I know the 15 years we had Papa I never saw any difference than what everybody saw. Doyle Fox had these same characteristics. None of them actually believed in themselves alone, all believed in what could be done with God. Big or small, they lived what the read and believed what they read. If I had met your dad in the street I would not have had to wonder or question his beliefs, and he would not have had to say a word. Simple observation would have told me he was a Christian. No stickers, no Bible, no preaching... their faith spoke louder than words.

  I also owed your dad for you. He and your mom raised 2 girls to be wonderful women, and I was blessed to get you. You look like your day in many ways and in many ways act a lot like him. He was proud of you and Glenda and loved Iris with all his heart, and she loved him. 59 years is a lifetime to spend with someone you love, longer than some people live, and a blessing. Sometimes it seems like God doesn't care or reward, especially when you see a man like your dad become bed ridden for so many years, yet I think I know why. Few people give true inspiration these days to make someone want to be a better person, and your dad was one of those people. I assume that God knew Glenn's strength in his faith. It does not seem fair until you look at the reward waiting at the end of this world. Your family was blessed by being led by a man who led by example with a kind heart, one that sees the good in people, looking past the outwardly appearance.

  He served his country in Korea yet was like dad, he hated war and saw it as something that should not be. Dad was that way, I think WW2 was way more than he ever wanted to see. That alone tells us he was a Godly man for Godly men are men of peace. I do not make that statement meaning that is what made your dad a Godly man but just to highlight a part of his attributes. I could count the Godly men I have be blessed to be around on one hand and probably still have fingers left. Godly men lead by example and follow Jesus. They follow the Sheppard, not the flock, and do so with humility and while living with this world, stand apart from it's traps. You can see hope and the love in their eyes and smile, hear it in their words, feel it in their touch. They have a peace and contentment that is so great inside them that one can feel it just being around them. They read and study the Bible and not somebody's view on the Bible. Their wants seem to be for a place where moths and rust cannot take away, and are satisfied with what they have. They make people around them want what they have and that makes people want to be a better person.

 You have temporarily lost much, yet you have not actually lost, just merely postponed. One day you will meet again, not as father daughter but as brother sister, with no pain, no goody-byes, no wants or needs, in a love and peace that I cannot accurately express. That is where he is now. People like your dad are already rare, and that makes me fear the world today and it's hopes. God only knows how many people have been changed just by your dad's presence, people he sought not to change by words but rather by example. Through his life he has been an inspiration. Maybe he knew this, maybe he didn't, but he was a true inspiration to many of us. I know this does not stop the pain just as I know you know where he is. His concerns, wants, and needs are all taken care of now... just like mom and dad. We haven't really lost him for he was never really ours to begin with, Glenn belonged to God and He loaned him to us. I believe that we all have a mission to carry out and we have just enough time to complete it, then we go home. It is said we receive rewards for doing well and I would think your dad got top honors. Jesus said to pick up your cross and follow Him... and so your dad did in an excellent fashion. He lived his life in Truth, Love, Peace, and Honor. An old Cherokee Proverb goes, " When you were born your cried and the whole world rejoiced. Live your life so that when you die the whole world cries and you rejoice." Your dad did that.

   I know that was your daddy and I know it hurts. I wish I could stop your pain, heal your heart, but only God can do that. If I can ease you suffering just tell me how and I will do it. I love you. Anthony                     

Saturday, November 8, 2014

Happy Birthday Josh

Big 14 years old. 

  Ya know kid, you are growing up too fast. Now that you are a big city boy, I don't get to see you as much. That means that I don't get to tell you just how proud I am of you and the man you are growing into. Then again, you have always been a good kid.

Saturday, October 25, 2014

10-26-2014

Happy Birthday Little Man
6
Love Ya Buddy

Tuesday, October 21, 2014

10-21-2014 Rathfoot Follow-Up

  Today I had a follow-up with Dr Rathfoot, just a regular one, yet different. He explained from the Radiation damage is the throat was suppose to be one inch in diameter, the scar tissue makes it about a half an inch, or roughly 1/2 the size opening it should be. He wants me to double the dosage of Prednisone until we get back to where we were before the surgery then surgery will have to be done again. How long is anybody's guess. He said the main goal was to not open my throat up with a Trach. I said that sounded good. I set limits as to what I would and would not do and that is beyond what I am willing to do, but I remained silent. Meanwhile Roxie, our house dog undergoes surgery for cancer. 

  Call it weird or whatever, I seldom actually look into someone's eyes, though I will appear to. I think in part why I seldom go into crowds. I feel whatever they feel, maybe not to a exact extent, but close. Rathfoot's nurse had told us not to mention his wife's passing, that it caused him great pain and that someone did and he went to pieces. I got use to looking in his eyes, such kindness, compassion, and hope, so I mistakenly looked as he entered. All the good qualities are still there, but there is so very much pain. He has a necklace on that had a cross and what looked to be his wife's wedding ban on. We knew about his wife but not that his mom had passed just 2 weeks prior. I know I still miss mom after months, I could not imagine missing her and Denise. I talk a lot and I talk even more when I am trying not to say something, so I had diarrhea of the mouth. Looking over Denise 's eyes were teared up and she talked more than usual too. Neither she nor I wanted to cause any more pain for him. Those who read this please keep him and their children in your prayers.

  I know at one time he read some of these posts, in time this is just for you:

  We didn't know your wife but we do, in a way know you. I looked into your eyes from the very beginning and saw nothing but good, and that would not be so without you were with someone good. My heart has broken for you and your family, yet I have no idea what words would make it better. All I can say is in time it will be better, never completely healed, but better. No, it isn't fair for those who have been left behind to heal, but to the one taken it is a blessing. It doesn't seem fair that good people die while other good people suffer. I use to wonder why we called it death yet Jesus called it life. The body dies but with that body all pain and suffering does too. All the trials and tribulations are dead. It is then when real life starts, life free of those afflictions be they physical, mental, emotional that holds these spirits in bondage. Here up can seem like down and down up, yet there all things are known, all things are clear, protected from all harm. We are free.

  We are here just as long as need be to accomplish what we were created for, and then return home. I do not believe that those of faith ever leave without accomplishing God's purpose. We may take upon ourselves other purposes that may or may not be accomplished, yet His purpose is. That we leave and are missed, shows we have fulfilled what Jesus said to do, live in truth and love. That we have lived it well and complete, and knowing there are no good-byes. If we have those people 100 years it would still not be enough. It always hurts to see those go before us, and that in our sufferings they might be lifted up to those who knew them not. That in our sufferings we can make His Light shine out of our darkest days so others may see and wish to know Whom it is we serve, and how to they can find what we have. Anybody can be happy when all goes well and all is well. This is what I believe.

  Where she is now no bad can ever approach her, no harm can befall her. No questions are left unanswered. Imagine your best day, you best moment of that day, and it would be only a drop in the ocean to what it is like there. Nothing hidden and all in the light for all to see. Nothing negative period. No sadness, no sorrow, no guilt. No hunger, no thirst, no needs, no wants. No blemishes, no sins, no fatigue, no wars, no sense of time. A place where you know everybody and everybody knows you, and you welcome and are welcomed by all. Everything is perfect, everything. This is what I know.

  If I can ever help you or your family in any way just ask. In the meanwhile you all are still in our prayers each night.