Monday, January 12, 2015

1-12-2015 Follow-Up

  I had a follow-up with Rathfoot today to see how HyperBaric Oxygen (HBOT) treatments are working. He wanted to see me after 10 treatments and today's made the 11th. I can tell a difference in my breathing and swallowing after that few. He saw a difference in it when he scoped me, but I don't think it was as much difference as he had hoped for. He said if he done surgery to do injections again that he didn't think I would be able to breath without a trach. He thought as soon as the breathing tube pulls out my throat would close off. I told him I was opposed to a trach and would not do one.

  We left it at he is going to try and get the insurance company to approve more treatments, but I have to go back fairly soon to be checked again. He said he would let me be the optimist, he would be the pessimist, and Denise could be the judge. I am refusing resection of my voice box or any other part that would leave a permanent hole. Apparently my danger is in getting a cold, but the real fatal danger is sleeping. I believe I have all the loose ends tied up, so it is in God's hands now, I'm good with whichever way this goes.

  I've been battling the Non Hodgkin's Lymphoma a lot lately. For whatever reason it has kicked into high gear and this time I can't seen to control the patches. I'd post a question on the Lymphoma Board but I have little confidence in that. I read it but stopped participating in it a long time ago. I have few friends there left alive anyway and I watch the same questions as was there ten years ago.

  I do HBOT with a few people, many are Diabetics who are fighting to save an amputation of a limb. It is a slow progress but I've yet to see it fail and of those times are when Insurance Companies drop their coverage for it. I hope the ones who make that decision dress light when they die because I serious doubt God will approve of their fruit and drop His coverage of them. There are several I've met with radiation burns to the neck (throat) who now battle to keep what they have after the cancer is gone. I would love to know where the adage "Do no harm" comes in that oath they take is.  

Wednesday, December 31, 2014

Monday, December 29, 2014

12-29-2014 Day 1 HBOT

  Today was my first day in HBOT and it has been a few years. I was nervous as all get out last night plus the rain caused my right knee pain to overpower Advil and my Arthritis medicine so I finally fell asleep at 4am, back up at 6am.  Denise took me there and wants to drive me until she has to go back to work, then I get the man that transports people to and from there.

  The staff they have there now is good, doctors seem to be decent. I dove with 3 guys and 2 ladies, but there could have been 4 guys. The 2 ladies both were older and had trachs. Before the dive started I ask if they had throat cancer and both had cancer in their vocal chords. The men from what I found out were diabetes related, sores or injuries that wouldn't heal. I was nervous. I thought back to a friend I had that served in VietNam who was 101st Airborne once said when he talked about para-trooping. I ask if he was scared his first jump and he said yes. I said I bet the second jump went better. He smiled and said the first jump he jumped out, the second jump they tossed him out, difference being, he knew what was coming. :) That was me.

  They fixed my hood while we were pressurizing and I popped my ears at least 100 times. I looked down just in enough time to see my water bottle wasn't loose enough and it was about to burst. They put an old movie on, Moses probably wants it back. The noise is loud and you can feel the pressure, but it doesn't hurt, then claustrophobia sets in as the walls make weird noises. Then the hood goes on and the pure Oxygen starts filling it. I felt kind of sick at my stomach but it soon passed. The doctor wants 60 of these but the insurance says 30, and my part of 30 is 1100.00!!! The ladies both have a lot of trouble, they can't wear hoods so their trach tube is connected in. I felt sorry for them. The black lady had the hardest time but come to find out she has had more treatments than the white lady. They are both very nice and so lady like. This was the black lady's last dive, my prayers are with her that she heals up soon. She was so nice and was strong, kind eyes, and hopeful smile.

  So when the dive is over and we are all dressed back in street clothes I spoke with the 2 ladies. I asked if the trachs are permanent. The both said no but the white lady said, "Shit I hope not", as she caught her teeth. John walked up about the time that came out and laughed and said he could not believe that came out of her mouth and laughed. She said "What the word or my teeth?" and we all had a laugh.

  I can think of better days and better times... but today was a good day. The Bible tells in the last days of trials and tribulations, yet some of us seem to jump the gun on those things. I wish it would be smoother, but then again, I have learned much and grew much. I have learned to be thankful for all God gives me, people, days, time... those things I took for granite most of my life. Funny how when I was strong I never seen me any other way, it was always the other guy this happens to, but now that it is me, I see how weak I really was back then. Having said that, it is not my strength that I rely on, it is His.        

Wednesday, December 24, 2014

Merry Christmas

  I wish everybody a

Merry Christmas. 

  Though we celebrate without mom or Denise's dad, we are blessed to have lived in their company and thank God for allowing us to be blessed by them. Denise, we have not lost them, they simply went ahead of us and one day we will be with them again knowing this time there will be no farewells. They now reside with the One we celebrate and because of Him we will one day reunite.  

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.