A Blog I hope that I keep up that will put perspective on just what I have experienced and what you can expect, God forbid, you should get it.
This Blog reads backwards from the most current to the beginning.
Well over the last 2 weeks I've attended HBOT (Hyperbaric Oxygen Therapy) only twice I believe, due to weather. I've lost ground some on the improvement that was taking place, but that should change once everything is back on schedule. Hopefully that was the last of the extreme cold weather and snow and ice. I have to admit though, it was kind of nice to sleep in.
I've managed to get a side effect from this that hopefully will be short lived, I've lost a lot of vision, at least half what I usually have. The only upside to that is I look better in the mirror now. If I can describe this accurately or even sort of: Nearsighted vision is worse than usual. It is a known side effect and hopefully will reverse after this is over, which looks like a long time. Everything is way out of focus and it's like the convergence is set high bleeding out on white or lighted things. I'll not give the real names of the others in there, but one, we'll call him D has lost more than I have. He has to sit at the monitor to be able to read the words on the movies.
There are usually several of us in there and it changes from day to day. Some days it is others who have had neck or head radiation and the others have diabetes and sores that will not heal. Some have had operations that will not heal with their diabetes. The ones who suffer radiation damage are a lot like me, some are worse like D is. I'm not sure if they are in danger of losing their throat due to the radiation damage causing the cartridge to harden and die, but I suspect they are. D and another guy, H, have never recovered their Saliva Glands. From the 90 I done in 2010 a miracle occurred and I have 1 that works most days most times. It isn't enough to keep me from having to carry liquid with me or to eat without a lot of liquid, but it is better than nothing. They usually offer cough drops and D says there is no point in them giving him one because he has no saliva to dissolve it with. I remember those days.
So tomorrow we switch areas from St Mary's, now Tennova downtown to Parkwest which is owned by Covenant Health (cough cough) Systems. I am no fan of Covenant nor the lack of care they give or the way they treat their employees. I don't care for their doctors either. Their lack of care missed mom's Leukemia and later on female cancer. Plus years past I have been there as a patient and know they are way lacking. The owners of HBOT have moved it to there though, shame it wasn't at UT. We keep the same doctors and staff plus the drivers will be the same, which is a plus. Now if Covenant will step aside and allow the ones now giving service to continue at the level they already do it will be ok. If not, then we will see what is next. I know I will not do a throat resection, but that doesn't mean I will bow.
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.
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.
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.