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.
It's been a day of painkillers today. Between two broken off teeth abscessing and my left side of my throat it has been rough. I've had to maintain a constant supply of it today. I picked up my X-ray but Boyd was closed by the time I got there, I'll take it tomorrow first thing. Maybe after Sydney talks with Green it will be ok to get the damaged ones out soon. It is amazing the damage that radiation does. I did get some stuff done today though which felt good. Big Ugly is once again read worthy, lol. I have the concrete squares in place for the gas grill patio but it needs to be bigger so that is at hand tomorrow also.
Matt & Misty came back here and I caught a couple of pics of them. This car will be so cute when they get it finished.
My voice done ok today as did my swallowing, tonight however it falls back again to bad. I got choked easily again and it is swelled tonight making it hard to breathe once again. From what Rathfoot said it is the acid reflux that is eating it up. I also read that another person was having trouble after radiation with acid reflux. They are also having trouble with saliva glands as well. I have found that while water does keep you moist somewhat, the glands respond better to something like Vitamin water, Yoo-hoo, Tea, etc. Prepping to hit the bed again.
While I think of it, the CTCL is helped by ocean water and the sun. I have spoken with two other people that go to the beach ever so often just for that and it helps them too. I thought of that tonight after Denise made our reservations for the beach. Funny, before all this happened we talked about going two or three times a year for short durations just for that.
Been a day. I ran errands all day today. I got the new monitor hooked up at the office then drove everywhere. I ended the day with me and Matt heading to get a car I accidentally bought on Ebay. It turned out good, despite what Denise thinks though for Matt and Misty had been wanting it. How odd that we were both looking at the same car. I know they will enjoy driving it with the top down this summer. If I can't ride the bike this summer I can always drop the top on the Skylark and we can follow them.
I bought five Strawberry plants and some cabbage plants. I got spoiled last year eating what few strawberries we got last year from one plant. I never got to harvest my cabbage so hopefully I will this year. God willing, I will sneak out tomorrow and plant them.
Today the two last teeth to be lost began to abscess and on and off all day pain and a fever. I used some of the Loratabs to ease it off. My neuropathy tonight has kicked in full gear, today it ranged from ok to not too ok, coming into it's own tonight. My throat hasn't given me a minutes peace today and my voice has been all but absent. Tonight the referred pain in my left ear worsens and I have been able to make a weird noise all day. My day yesterday at the junk yard coming back to haunt me?
The CTCL is on one of my eyelids now and working on my eyebrows. It has been a long time since it got that part. If there was such a thing as the sun it might help drive back the CTCL a bit, lol. The had thing to work around I can already tell will be just that... sun. My neck stays heated and red and it doesn't take much sun to burn like fire. Green also said that I will have a greater risk of skin cancer on my neck now. I know that sunblock is very caustic as is suntan lotion, so where is one to meet in the middle at? Once again I can feed one or the other cancer.
On a metal and emotional note I might mention. One goes through many emotions throughout the roller coaster ride. I can't even stage it from here but I'm sure it shows up on the writings at that particular time frame, but I'll deal with now. The level of frustration is high and the tolerance for people getting angry is low. There is a point that I have come to that I know I need to stop and heal, something that wasn't possible for a couple of weeks because I was needed and events beyond our control was at hand. There is also a point to where frustration steeps high due to a lack of not being able to do, especially if they were very active to start with. Fussing at the individual is actually detrimental to anything being accomplished and actually detracts from anything positive, especially desired results.We have very little patience with ourselves let along someone fussing and getting mad. Life is short and I think anybody who has been through this realizes that life is nothing longer than the flicker of a candle. So... how do you want to spend your time? Angry, or making the most out of each minute you have left.
Now I know this may be hard to read but I took a picture of the sign today. I'll try and get a better one tomorrow.One day while coming back from Chemo or Radiation, I don't remember which, I was sick as a dog. I had just decided that I would give up. Somewhere back in the older posts I talked about it. The way it sets one can just barely catch it. This made me try again, I saw it as an omen. Well Here it is.
Wet and cold again today but Matt and me went to Pull-Apart, man did we have fun, or at least I did. I found the armrests that I needed and then some. The chemo fog set in again and I remembered Big Ugly having a cracked tail light, right and wrong both at the same time. I had Cody fabricate a flat Steel Bed for Big Ugly so the tail light I remembered was gone, no longer needed, lol. I guess I can just save it in case Spot ever needs one. We ate, went to Harbor Freight then home. Neuropathy and all, I made it around. It worsened as the day progressed.
Megan and me went to Sears and bought a new refrigerator. Ours is still working but it is old and cannot last long. We will probably use it for a spare but may give it away. Denise wasn't thrilled with the final cost but it was what we both agreed on and with the warranty even on sale over 1500.00! Things have gone up. Another thing marked off the list now.
The CTCL isn't letting up and my eyelids are pretty bad. My left side of the throat is hurting pretty bad and tossing referred pain into the right ear. Denise says its where I have been outside in the cold damp weather. I finally just before writing gave in and took a pain pill, but a lesser one. Denise's back is finally better ad Megan's Intestinal bug is gone, but I think she may have passed it to Misty and me.
If my body so sees fit, I have a lot to accomplish tomorrow. Help mom in the morning and maybe start the small area where the grill will go, actually I'd like to finish it an grill tomorrow night, a dream I know.
It is another wet and cold today but for some reason (I'm not complaining) my neuropathy backed off a bit in pain. Then again, I didn't do much today either. I did notice my head swimming when I went to Sears and by the time I went to Walmart, I needed a buggy to help maintain my balance. Buggies are big walkers. This was however a different balance thing, like spinning, even when sitting down. Even with a lot of gray hair I still love it yes Denise, even the beard.
After a brief stop by moms and talking a bit on the phone with Misty, Denise and I were sitting in the living room watching something on the History Chanel and I just hit another wall of cold and exhausted. I had these bouts all day periodically and I went into the bedroom and said I'd be back... I didn't. I slept from a little after five until about ten-thirty. It's after one am and I am about to go back to sleep again. Today I've had a lot of fatigue and depression. I have always had the ability to work to get things off my mind and this time I face it without that ability. Dad is truly missed yet I know he is in a better place.
The Non Hodgkin's Lymphoma is raging and is all over my body now. Funny, it appears they have killed one cancer and fed the other. I will still wait until I meet with Green next month to see if I can resume the NBUVB, it may have progressed past that now though. I have decided if it has, I will let it take it's course. That is not depression nor giving up rather just exhaustion speaking along with knowing what I can and cannot do, and what I am willing and not willing to do. There are a few things to get done that I have found in order to get my affairs in order.
My weight and hair have both increased. I welcome the hair, lol...not the weight. I have put myself on a diet until I can actually do physical work...a lot of it too. The only place I have a tan is my neck, which is still very reddish in color and still feels hot inside. My voice weakens quickly even with water or liquid to keep it moist. I go from a Sling Blade voice to no voice rather quickly and you know me, I like to talk.
I write what seems at time trivial to some and unrelated yet for those who go through this it will hopefully let them know, along with their family and friends, what the mental and emotional aspects that can be. That doesn't mean they will be. In part, this is like a diary now and I have opened up to say things you would not get from me when we talk. This is a game of hurry up and wait now, but isn't all life like that? In the meantime I want to open up just to let those who read and stumble across this that whatever they feel, its ok to feel it for we have all felt that before. There is religious preference in this to know what I know, you are not alone even in your darkest hour unless you want to be.
I would like to see more feedback on this blog, let me know what is and isn't, questions one might have. Things one might like more or less of. Things you wish to know.
I woke up this morning in a lot of pain both in the left side of my throat and referred ear pain. I basically started out the day with a hit of Morphine... not a good thing. my neuropathy was still raging but not as bad as yesterday, but close. We managed to get the taxes done late last night and went today and had them done at H&R Block, 500.00, but I'm glad its done now. That was some stress off.
I got very little actually accomplished today but I tried to take advantage of the beautiful day... just didn't quite work. Megan has an intestinal bug and Denise's back is still out. I had a hard time with balance but I'm not sure exactly why. I can now fully understand dad's frustration. mentally you know what to do but the body isn't willing and the mind will not retain some things that need to be done until it is too late to do them. If this is a glimpse into the future I hope that isn't right, if so, they can have it.
We went to Morristown to get a screw that Sears forgot to put in the new Grill, some pavers which God only knows how I will get them in place, Easter baskets, and look at refrigerators. Since the two main trucks are down we took dad's. This turned out to be good and not too good. I miss him dearly. Way too many memories for both of us. I know crying doesn't help this stuff but...
Maybe tomorrow will be better. This video is for Dad, Annie, Papa, Joe, Edna, Gerald, Keith, and The Old Man...
I made it exactly 57 minutes until I woke up in extreme pain from my mouth and throat drying out. I just gargled with Miracle Mouth Wash, took some Morphine which I have to wait until this pain eases then go back to sleep. My taste bugs and tongue are inflamed so even the (Liquid) Morphine burns. I took about 17mgs which I average when I do take it between 10-17, seldom do I do 20mg. The liquid mixed with water is easier to swallow than a pill an can be cut easier to a lower dosage. A pill I would have to get my mouth and throat wet with water, then a Yoo-hoo, the use something that has a coated texture, I use Yoo-hoos to swallow. I do that every morning. I keep Yoo-hoos just for that purpose. That is how I take my pills unless it is with milk, it lessens the chance of getting choked. I should have said that sooner, it may help someone else with this junk.
More later........ That little prep afforded me to sleep until 6am and I have awaken with the left side hurting mildly and I can still hear and feel the little flap thing fluttering when I breathe. I'm still tired so I may sneak in a few more minutes.
Another day of rain. The neuropathy was worse today than normal. I'm not sure if I'm still paying for skipping the pill two days ago or maybe the rain or barometric pressure has something to do with the intensity of it. I talked with Sally and hers was worse today too. I know it sure does have a profound effect on my shoulder and sometimes knees. I did still manage to go to Walmart and get two trees, a Blueberry bush, and four Easter Lilllies. dad always got everybody one and I thought maybe he would like that. The trees I know I probably can't plant but I thought it would be something Josh and Brandon could do with me and Megan. Something they would always have to reflect back on one day.
Another day without no pain meds other than this patch, right up until tonight. Cajun Chicken Biscuit from Bojangles, while good, is not a smart move, lol. The acid reflux isn't as bad. I took Kim's advice on how to take the meds and eating too. The acid reflux though walks over the OTC ones and the insurance company will not approve two pills a day or the Nexxum. There is something seriously wrong when insurance companies can over ride a doctor's orders. They would rather spends thousands of dollars and chance a life as to spend a few hundred dollars to prevent the thousands and save a life. I fear this will get worse now.
Bad headaches and referred ear pain today along with swelling, but manageable with focus. My weight seems to be going back like it was. I smell food and gain weight, lol. I'm trying to not get back the belly I had to prep before chemo and radiation. The "chemo fog" seems a bit worse and focus on what I am doing was a bit off. I actually went into a ditch, missing a driveway. If something like that happens again, I will ground myself from driving again until I feel comfortable doing so. I think I was over focusing on blocking the pain. It sounds good, I couldn't use the sun was in my eyes, lol. I think today, I was paying for yesterday's activities. I have bouts of extreme fatigue that come out of nowhere. If I set down I fall asleep, so I try and not set down. I have to work on my consistency and duration I think to get myself back to where I was, and it looks like it may be harder and longer than I first thought it would be. Depression also seems to be a factor along with frustration. Mentally I want to do and think I can, provided I don't forget. Physically however, I wear out fast.
Beautiful day today. I managed to actually stay up this morning and get some playing done. My throat is well enough to once again sleep in the bed, now if I could get rid of this Sling Blade voice I'd be set. I done a stupid move again yesterday thinking I could cut one the pills for the neuropathy and I'm still paying for it today. Live and learn I guess. I added one today and it seems to be working out all but tonight.
I kept active with the beautiful weather but it doesn't look like I did. Washed dad's truck then backed it back into the garage, it still smells inside like dad. Fixed the battery cables on Big Ugly and put the back spear on the tractor. Moved all the old tires into the garage around back and covered them up. Cleaned up the yard. Mom called and we all met at Cracker Barrel and had lunch. Visited with Misty and the babies. It was just a perfect day. I wished I could have gotten more done but I got in trouble for doing that, lol. I haven't taken any pain meds today which is great. Now if I could just get rid of the patch.
There is a hissing in my right ear, sounds loud. I had it once today. Rathfoot said something about the pressure caused it and it should leave as the swelling goes away, if I remember correctly. There is a constant ringing and referred pain occasionally but the hissing only comes every once and a great while. The first time I heard it I thought Denise had a flat tire, it's that loud.
My CTCL is running wild and wide spread. I wore short sleeves today and really didn't want to get out into the public like that. While the Chemo stopped one cancer it seems to have allowed the other to run free. We meet with Green next month and plan to ask about using the NBUVB, Panella says I can provided I shield my neck. I still want to hear it from Green though.
I have went back to using the Miracle Mouth wash before bedtime. It seems to keep my mouth from drying out as fast but I still keep a bottle of water at bedside. I wake up every so often with a dry mouth. We are talking one where your tongue actually sticks to the roof of your mouth and extremely painful. My Saliva glands seem to be trying to work again somewhat. I also keep the biotene spray near at all times. Tonight the referred pain is in the left ear, the side that Rathfoot said was the worse and oddly enough, the opposite side the tumor was on.
Had my appointment with Rathfoot. Sodas were not the answer to this one like with scar tissue. All that led to was pain killers afterward, lol. I think my brain stuck in stupid gear this time.
Rathfoot said that my acid reflux was worse and that I needed to take a pill in the morning and afternoon. He scoped my throat and said that it was in worse shape than right after my radiation. Between the acid reflux, talking a lot, and stress, it has taken its toll. He said that it looked like a bunch of "water balloons" in there. He said that even my Epiglottis was swelled too, which explain the choking. I wonder about the Banana Popsicles, they offer some relief, yet afterward a reflux. He put me on 20mg of Predisome twice a day and Dyfluken, one pill ever four days. I have no idea what I just typed, Denise told me what they were and what was said, lol. I just know I hurt and he gave me some meds. He said we may have to stretch my throat in the future. There is not a lot that can be done for the stress but the talking and reflux I can do something about. This may also be my fatigue.
I slept late today, about 10am. I went to Boyd and he is going to talk with Green about taking out the teeth I lost. I came home and goofed off a bit the hit the couch about 4pm, slept til 8pm, now I'm sleepy again.
The coke I drunk seemed to help a bit, I'll still sleep in the chair again tonight.
I woke up this morning about 6:30, went back to sleep and slept until 8:30. I had a pretty decent voice this morning. The other post was actually more like 03-20 but I dated it because I wasn't paying attention, lol. Last night was very similar to that night...I slept in my chair. I walked what I considered normal because I polished my regular shoes and wore them to dad's burial. A lot of pain still after my ham episode but the bleeding has subsided. My saliva glands still aren't working properly. My throat is still swelled and I still sound like Sling Blade, lol.
I have the whistling in my right ear, like air being bet out. It doesn't hurt but can be distracting. Dad would have been proud of his funeral today and all those that took part in it. Thank you to all the ones that took part in it.
Denise is going to call Rathfoot tomorrow and see if he can see me early. Tonight, I sleep again in my chair.
Well, I'm setting up tonight. It's 3:43am and I am tired but when I lay down or start to sleep, I can't get air. It feels like my throat has closed off and I simply quit breathing. I have some pretty weird dreams or something while this is happening. Then I awake and gasp for air. My feet are completely numb, not like numb from the neuropathy, along with my hands and chest pain. I just can't get enough air. I can her the flap thing sound like cards in a bicycle spoke. I even lay down and just simply stop breathing.
I kept it in control at dad's funeral. I seen people I haven't saw in quite a while. I figure I'll try it again. No pain though except for the dryness. I read somewhere about soda helping, this is my third glass of Pepsi. It burns terrible but at least if might just work. This morning I woke up and couldn't talk but after brushing me teeth and hacking and gargling, I regained my voice back to an extent.
My visit with Panella went ok today. He just prescribed more Morphine.
Big thing is dad. Friends will be received Saturday from 11-8pm Family from 11am-8pm. The funeral will be Sunday at 2pm at Farrar Funeral Home in White Pine. Sorry, I was exhausted last night.
I stayed up working on the data for mom until about 3:45am and was back up a little before 7am. The pain wasn't that bad but eating is back where it was, hard to swallow and some goes up the nose and some in the airways and some where it should. I thought I would be past this by now. I stayed at the office until 12:30 when I came home, the pain level was too high. I took some 7.5 mg Loratabs with me and after I had to use the second one, I thought it was tine to go, I didn't get all of it done.
I used Lidocaine, forgot about that, to ease it off. It did some but very, very little. The swelling is slowly impairing my breathing and you can hear the flap moving are a gurgle or wheeze when I breathe. The referred pain is back in just the left ear so far. I used some oxygen and it me from feeling like I am smothering for a little while. I will update if anything changes.
I have an update on dad on his page, it's not good.
Breathing is extremely labored tonight and so far I have done 2, Loratabs with nothing working. With 2 pain pills, the pain is still at a level 9. I'm not sure just why. I will sleep in my chair tonight. Everything else is fine though, even the outside is tender. Sun???
Been a day. I stayed at the office until about 1130am when Denise called and caught me, lol. That was an early lunch and totally unexpected. The pain level has been on about a 9 today so I've took about 10mg or morphine twice today. Unfortunately I forgot tonight and took 15mg too close to the 10mg. I'm not sure how that will do with the 25mg patch. I brought the oxygen in just in case. I also looked up the signs to look for and antidote, not that I'll be awake for it. I'll either wake up here or there. I am pain free for the most part tonight and it feels good for a change. Breathing is a bit labored though. I think in the hospital I had 75mg patch and four times a day when my neck was cleaned and dressed I was given 30mg of morphine 30 minutes before before they started. Then again, I was use to it and I had oxygen and watched, a bit different, lol. Guess I'll stay up few hours and do some paperwork for mom, just to make sure. I ain't the brightest bulb on the tree but I have this memory problem lately. Chemo fog? I am so over this.
The pain has radiated to my ears again except this time plural from the swelling. On a good note, the pain in my feet is tolerable so 1800mg of the whatever it's called (600 mg x3 per day)is good enough for me, I see no reason to go higher. I'm even mastering the balance loss and what makes me lose balance for the most part.I can't help but laugh at myself when I bust my butt, but it doesn't happen much.
The swelling and redness is pretty noticeable. I visited Matt & Misty and she mentioned I was swollen and the red. It's nothing like the inside feels. I didn't get to see dad today, but Denise offered to take me. I have updated his page tonight but I waited for the latest news since the first news wasn't good. He is holding his own, man is he ever tough. I have seen him fight through worse and come out of it. I pray that God allows him to do so this time. That has to be the hardest thing, seeing him there and he is aware. His mind is still functioning perfectly. He speaks, laughs, talks (as best he can), and knows... yet his body just isn't cooperating. He had a very bad and rude nurse yesterday but last night and today, and tonight...good ones. I have no idea why a nurse would stand over somebody, repeat his age, tell how bad he is, and give the impression he probably won't make it. She said she had been there 24 years. I worked at UPS for that same length of time and treated every package like it was the first, most important one. It would seem to me that should one become that burnt out they would take a break or find something else.
I didn't write last night, sort of went south a bit. Nothing has really changed a whole lot except I have been able to swallow my pills rather than to crush, except this morning. My throat seems to have closed off a bit more but the chest pressure has gone. Still have some meat parts coughing up, or at least that is what they look like, Denise said she don't know what they are. The Predisome and Bactrum double strength do not seem to have any effects. I have a regular follow-up with Panella Friday so I guess we will see then. Who knows, maybe he will order a CT Scan or open MRI on my neck a little early. I am so tired.
I have learned that if I take a pain pill in addition to the patch I can talk a bit louder, so I take one before we see dad. It is still painful but less which enables me to push harder before I reach my apex. He don't hear well and I don't talk well... not a good combination. Today I also took one before National Geographic came, it went well, he brought an additional mic that he place close. It was about 2 hours not counting setup. Very enjoyable.
I noticed tonight there is some blood coming up as well and it sounds like a flap is over my throat again, swelling maybe? I took an additional 10mg of Morphine tonight, last night I took nothing. I have to get a bit more sleep and easing the pain is the only way I know. I stopped in the Sunroom for some oxygen. Does nothing for the throat pain but it does make me feel like I am not smothering. That is a weird and scary feeling. My sinuses are stopped up too, maybe related.
Dad is worse tonight, see his update.
Well it is after 2am and I got the BPO done and while I was going to sleep late tomorrow that just got canceled, have to be at the office early.
I am coughing up some kind of meat again. Must be spare parts, lol. Lots of puss and my throat is still swelled to the point it is visible. I would say I will hit the oxygen again, getting some chest pressure again and hard to breath. Funny, the swelling went down enough to take all but my heart pill, the smallest one, lol. This morning we had to crush and mix with water to take my meds, tastes bad in a way. I’ve only used 1 pain pill so far so that I could talk to dad. God it hurts to talk. When breath you can hear a flapping noise, sounds like some kind of weird animal, lol. I’ve felt but forgot to take my temperature. Probably like yesterday, 99-100. I’m guessing that three hours of sleep ain’t helping. I am so tired that I probably will just copy and paste this for the blog. I can’t quit now though, mom and dad need my help. The guards are getting use to me at Ft Sanders, I think they thought I was drunk the first few times the watched me walk, lol. Denise helps me to stay on track, I do good on short walks but not too good on long ones. Still, it could be worse. Tomorrow is booked solid and I may stay up and do some of the paperwork for mom. That way she won’t be worried and free to focus on dad. Got 5 sold so far. I didn’t do this well before I retired my license, lol. If I can get about 4 hours sleep tonight I think I’ll be ok.
You outta see my throat, not sure it was ever swelled like this even through the radiation and chemo. I may have to take a pain pill or morphine to sleep and go in the sunroom to hit the oxygen, it usually relieves the chest pain but I have the nitro close. Funny, the tumor radiated a referred pain to the right ear, this one is my left ear but not as painful. I don’t think the crying helps. This will be like the time me and dad pissed off yellow jackets. He is allergic to them, luckily they came at me. I told him to run and I stood still until he could be cleared, then I ran… got stung 21 times, lol. It passed as will this, just got to hold on a bit more, he would do the same for me. I had 106.9 The Light put him on their prayer list. Great station. I’m worried about Denise, she forgot her BP meds. I tried to get her to take mine but she won’t.
I look at dad and what pain and fear he is in… this is nothing to withstand. I’ll go until I can’t, then I’ll dig deeper.
Love Ya, Anthony.
I may have overdone it a bit, but I had to do some stuff for mom at the office which turned into an all day job, but I got it all done, 2 contracts and a lot of stuff. I am so tired. Dr Rathfoot called me in some antibiotics and predisome. Megan and Josh noticed that me neck was swelled up on the outside, God know I feel it on the inside. I took pain meds for the pain which has overrun the 25mg patch all day.
Me, Denise, Megan, Misty, and Matt ate at Shoneys on the way down to see dad, I was able to eat pretty much what I wanted with quite a lot of pain, that one too a Endocet. Tonight when I got home I attempted to take my pills but my throat has closed off enough to get them stuck. I got one up twice, the third time it went down. The next pills stuck and Megan helped me get it up. I tried it again and Denise helped get that one up. She came into the room from the first one when she heard me choking. I left a mess in the floor swallowing a large amount of water which also came up with the pill. We ended up crushing the antibiotic and I am skipping the blood thinner.
My voice is all but gone and extremely painful to speak, but those that know me know my big mouth, lol. Denise is worried tonight that my throat may close up. I have to admit, I am too, so I will make my peace with God again before I sleep just in case. This is all too familiar and what will be will be.
Breathing is labored. I went into the Sunroom where I have the oxygen, it did seem to help with the chest pain but I have the Nitro close.
The extra 600mg of the medicine for the neuropathy does away with most of the pain but the first 30-40 minutes I have to keep down until I get my balance, sometimes longer. It does nothing for the numbness though so I have to watch the terrain and like I done 17 years ago I step hard for the vibration in my legs to know I have a good footing. It looks funny and it wasn't until tonight that I noticed guards and police looking at me like I was drunk... so embarrassing. It beats pain though. Denise helps me walk long distances.
There seems to be puss like junk that I get choked on that comes up with some effort. I have ran a low grade temperature all day from 99-100. Where does this chemo fog come from, lol. It seems worse but surely all this will pass. I guess right now I'm too deep in the forest to see the beauty of the trees.
The pain is still there but tolerable. My balance is gone but I have to get some things done so I will have to try, have some stuff to do that cannot wait. If I can make it to the car I'm ok I think to set up and drive a short distance. My voice is pretty much gone.
Dad had a bad night last night and may have had a set back. Those wanting to know about dad, I will be back shortly so email me and I will email you when I get back on his condition. I am sorry but if you call me or I you you could not hear me too well if at all so email me, my voice is gone. Maybe later it will come back.
I will update later and update on dad as well on the page I done earlier.
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Today was a strenuous day as I have talked entirely too much. I have an infection and a cold and the swelling makes it hard to breathe. I had to break down and take a 15mg Morphine pill and about an hour later another. The 25 mg patch just got ran over.
On a good note, the added 600 mg in the middle of the day has all but stopped the pain in my feet. It has a bit more effect on balance but not much. Honestly, it can get funny when I head one way and end up the other, so far I haven't fallen. Denise and I went up to mom's tonight when she said she had a weird call and they thought they heard something, Annie is staying with her. So Denise and I headed up that way to check. She had her .357 and I had a 9mm and my .38, I'm a worse shot that she is with a handgun, lol. I looked like a drunk trying to walk around the house, lol.
The script didn't come today so if it is not here by tomorrow I will call Rathfoot and get him to send one for the infection and cold to at least take the swelling down. I stayed tired from yesterday's activity.
I know this has nothing to do with throat cancer but many family members and friends read the blog.
Thursday 3-15-2010
Dad fought a valiant battle. but it is over now and found him at peace. He spent many hours. We will be lost without him I'll wrie more later............
Wednesday
Things have turn dramatically worse. The doctor gave no hope for dad. I'll write more later. Denise is talking with her sister that is in Quality Control at Ft Sanders. She wonders why he wasn't turned and why they will not suctioning him, especially since mom said repeatedly she wants everything that can be done to be done.
Night -
They didn’t say if he was or not, his vital signs are normal but today and tonight, his o2 stats though are low, and they had to put him back on 100%. They are still low hitting the 70s tonight. His kidney function and pneumonia are worse. He still knew who we were but he didn’t speak. His nurse tonight is wonderful. I got him to laugh once. He wanted the TV channel changed, he wanted the Weather Channel. We were knocked backwards to see the wrist band DNR on him. We stopped at moms and I went in and talked with her. She thought I would be mad and while I am partly against it, I have to agree with her. I told her I would stand by whatever she decided to do. It was a hard decision for her, I’m not sure I could have made it. Maybe that is the reason for his suffering, God knows that we would have been crushed if it had been sudden and would not have left go. Misty took it had, she couldn’t stay. Matt said she cried all the way home. Think it threw us all for a loop. She has asked earlier and I said no and I thought she wasn’t going to do it.
His eyes were intelligent and he looked so scared. It is a different feeling than can even be imagined when you know your life is ending and you can’t stop it. We talked to him and he seemed at peace when we left. The nurse ask him if he was in pain and we said he had moaned a few times and she gave him some Morphine. He gripped tightly my hand and Denise’s hand in his other for a long time. I prayed a silent prayer to God that if He is going to take him please do it tonight and if not then please help him to improve. We hated to leave but after the pain shot he started to rest and sleep. I didn’t want to be there when he dies yet I don’t want him to die alone either. Mom said the same thing. Denise cried a lot and lost it a little but held it together. He raised up once or twice. He wants so bad to leave. They had the straps off him tonight.
Tuesday 16th
Today's initial reports from mom and Charlie weren't good. When they left he was in a shaking episode but they said it wasn't a seizure. They said they couldn't give him anything because it wasn't time to. He is still very much coherent and wants out. Mom said at one point she told him he was in the hospital and not a Nursing Home and he calmed down. He talked to them quite a lot. He got some physical therapy today.
We didn't go tonight but Misty & Matt did. His kidneys are worse tonight. His pneumonia was a bit better tonight. His vital signs are great and Misty said he raised off the bed. They still have him in restraints but far more humanly than MMHS did. He seemed to have a good nurse today. Misty said he talked a lot tonight.He was laughing. He said he was tired. He said he wanted a kiss and when Misty kissed him on the forehead and he said Thank You. Misty said he looks a lot better. He yawned a couple of times. He said he was tired and he said he was sore so Matt massaged his feet. He is still far away from danger, just not sedated. I think it helps a lot to have family there.
Monday 15th
He is still coherent and wants to go home. His pneumonia is worse and his kidneys are worse. His vital signs are good though, actually perfect. His speech is a little impaired but part of the may be the mask (I cannot remember what Denise called it). He is still getting seizure meds as a preventive. They are limited to what they can give him. What will help one thing will hurt one of the other things. He didn't look as good tonight as last night. The nurse that was on until 7:00pm was pretty cold (so I'm told). The nurse tonight though seemed good. He wanted the TV turned on and to CNN. He coughs a little but not enough to extract the fluid building up in his lungs. It ain't looking good. They plan on x-ray on his lungs tomorrow. He still tries to get out of bed. They think he is confused, but I would want out of there too.
Saturday 13th
Mom called today crying, the kidney dr said his kidneys are at 20%, didn’t give good news of hope for making it. Tonight the nurse said they might start him on PT, but I really don’t see how, think she was BSing me.
He is in his right mind, scared, and in pain, but he is fighting. I told him tonight to keep fighting and when he comes home we will care for him. He talks but it is hard to understand most times. He asked for mom. Said he was cold, he was uncovered and when they saw me covering him up the nurse came in and started talking. She said he said he was hungry. He told me he is thirsty . They have not given him any nutrition, no TPN or anything. I hope there is a reason for that. Denise went after me and Misty and she made them set him up a bit so that he would be more comfortable. Denise, Megan, and Misty showed no fear, no tears, and no negative emotions until after we left him, they cried. I’m worried about Denise, she forgot her BP meds. I tried to get her to take mine but she won’t.
Friday 12th
This is an email I sent to Patty and dad's condition:
We went in and seen him, taking turns. Misty and Matt, then Me & Denise then I left and Megan went in then me and Matt went in. He talked and knew all of us. His left eye has taken a hit and his mouth was drawn up. He did have good color but his blood pressure was high and his kidneys are functions a little better but nowhere where they need to be according to the doctors. He talked to each of us as best he could and at one time the nurse briefly took the oxygen mask off his face, but his oxygen level dropped pretty fast.
Misty and Matt said he kept saying my name so they came out and I went in. They told him and he told them he loved them. He was hard to understand but he told me, Denise, and Megan he loved us back. I couldn’t make out a lot of what he said and to be honest I can’t remember it right now. He kept asking for mom and we told him she had come home to rest but that she would be back in the morning. So he does have memory.
The doctor said that he is in danger of another stroke. He doesn’t know to what extent the damage has already done or what therapy if any he can or will get. He kept putting his leg out of the bed. When I thought about it, he slept that way in the bed. I pray he will come home but I don’t know, he has so far to go and I’m not sure he can make it. We all cried when we left but not in front of him.
Love Anthony
Dad is at Ft Sanders and is holding his own. They have worked extensively and thoroughly on him and in a humane way. He is heavily sedated and on a ventilator. From what they know so far his kidneys are not filtering very well at all. I heard the numbers of either 12 or 18%, but they are checking that now. He has had a Hemorrhagic Stroke as best they know right now but they do not know what caused it yet. His skin is torn in several places, it is very thin and the rough handling and straps they tired him down with at Morristown Hamblen Hospital have done some damage, but nothing that will not heal in time should he recover. The ENTs punctured and ripped a pretty bad hole in his arm attempting to start an IV. The treatment he received at the previous hospital also took a bit of a toll. Like they elevated his feet and lower his head extremely which was opposite to what should have been done. According to Quality Control at Ft Sanders, the Atavan was the wrong drug to give.
It is not clear if he will survive the stroke or the 5 hours of ignorance he received prior to Ft Sanders, and I am being polite here. While he is 85, he is a fighter, we seen that today. They do not know what and how much damage has been done or where it has been done. He can move and feel both sides and all limbs and he was talking earlier. It is thought that it has effected his memory somewhat. Having said that, I wish to share some of the day with you.
It started with him shaking so hard the bed shook, and mom (grandmother) woke up with him in extreme pain. She called mom and Charlie who rushed over and they called 911. Mom (GM)then called here and Denise answered. By the time we got up there they were fishing him through the door and Charlie was clearing a path for them to get out to the Ambulance. They said that he could not make it to Knoxville so I said take him to Morristown, a decision I later regretted. It was later told to mom, Charlie, and me that it was 1 hour before shift change and one of the guys (I'll omit the name) didn't want overtime. Its not clear if this was accurate or not. A good source says it is not, but it came from another ENT.
They restrained him in the bed because he was combatant, not that an 85 year old 145lb man can be a threat, lol. It was brought to light that his kidneys were not properly filtering from a previously by Dr Schindler the day before and that his thyroid is off. This would also explain the back pain he has had. He kept pulling off the mask and finally I thought maybe he wanted to say something. He used everything he had to mutter, "Hurt...Hurt". That is when I requested that they give him something for pain. Mind you, this is after about 2 hours of being restrained flat on his back.
During this time Misty and Annie came in. Misty held dad's hand and said she loved him and he squeezed her hand tight. She said it again and again he squeezed her hand tight. Misty talked to him then Annie talked to him. They both showed no fear in their eyes, I am so proud of them. At some point it broke but they backed away, telling him they would see him a little later and both Misty and Annie bowed their heads together with their arms holding each other and cried silently. Annie is not one to show emotion. That is when I had to back up myself and fight to keep too many tears from coming out.
I left for a little bit while mom and Charlie took care of him when he came back from an Cat Scan. I wasn't very nice 45 minutes later when he had received nothing for pain. Once he got the Morphine he settled down a little and eventually they took the restraints off him. He curled up in a fetal position and even though he squirmed and could not get comfortable, he wasn't combatant.
He turned and looked into my eyes, those blue eyes full of fear and pain. I knew what he was thinking, I had been there too many times myself before they found my tumor and cut away part of it. That stare was heartbreaking. I held my hand out and said, "Rest, you need to rest dad. It's ok to go to sleep, you'll wake up. Hold my hand and I'll be right here when you wake up. You need to rest...it's ok. You will be ok". He reached out his hand and held my hand and slowly his eyes closed. He slept for maybe 5 minutes. When he awoke he looked right at me to see if I was still there. There wasn't a smile from him but his eyes told the whole story, and the fact that he grabbed my hand tells me he knows...he understands and knows. He was scared and who wouldn't be. He had awaken in probably horrible pain, had his skin torn, his arm had a big hole in it, in a strange room naked with bright lights in his face strapped to a bed forced to lay on his back with his back hurting.
Now that he has been transferred to a good hospital he is heavily sedated. I am convinced that while he may or may not know me, he does understand. He may make it through the night and he may not, he is in God's hands now. He at least looked better tonight when we went to see him. He is ICU and taken extremely good care of. We went down and took turns when visitation was allowed. Me and Misty, then mom and Annie, then Denise and Megan. This was Megan's first look and she took it hard, so hard. She never spoke coming home or even when we got home. She refused to speak. While I know at 85 his age is against him he has a strong will and is a fighter. I'm not counting him out.
I will have to wait until I can catch a ride tomorrow, one that will be coming back soon. I'm not strong enough yet for that far of a drive or a long time down there. As soon as I know I will update dad's condition. You can call if you want. All prayers are appreciated and needed.
NEW UPDATE: 03-10-2010
They ran an MRI on him but it will be tomorrow until they know the results. They did test him and he knows which hand to squeeze, raises his head for a pillow, and seems to recognize mom and Charlie. At 19:00 hours he was running a fever of 100.6. He began to move around a lot in bed, raising his blood pressure so they sedated him. He seems to know and respond but they still are not sure how much damage has been done, but they think a clot from either the kidneys or heart was responsible for the stroke. They are looking at the kidneys which have filtered better but still lack a lot. They say the next 3-4 days will tell the tale.
Ruth called this morning. They upped those dose for the neuropathy to 600mgs three times a day. She also said to take two Advils. She also said they were extending the patch, which I'm not crazy about. I forgot with all the activities today to tell her I have developed a cold in my sinus and throat, so I called back and told the lady who answers the phone to ask her for something to fight it. I am exhausted right now.
Turned out to be another beautiful day. I started early this morning on taxes, helping mom with BPOs and entering her listings in the board, then someone called and said it was warn outside. I finished painting the bed on Big Ugly. But before I did I called and talked with Ruth who was to talk with Panella and call me back. Well, that was about 9am and it's now 11pm and still no word.
It keeps ringing in my ears when we talked about these anxiety bursts and he said dig a ditch because I was a very active person. That is all well and fine and I'd love to but it is just a little impossible without balance and feet that are numb yet the bottom is so painful you can't hardly walk. Tonight Denise and I are at odds. I say if blood work is all he is going to do I have no need to go back, I can get that anywhere. I'm not just urked, I'm in pain and pissed. Pain pills don't touch it and the meds aren't working, not that he even offered them. I reach a similar point with Vanderbilt, except I didn't like what they wanted me to do next. TESB is not my idea of fixing anything... but I could be wrong. I think next week's visit I will push for the CT scan to see if my lymph nodes are clear, that's all I really need to visit. Again I can get that from elsewhere too if need be.
The CTCL is going wild and I think this is the worse attack I've had in the almost 5 years since it was diagnosed. Beat one and feed the other, lol. As long as I have my hair when I leave, lol.
Yep, I'm disappointed and not in a good mood. Thank God I have Sally, Kim, and Sal to talk to today, they are my islands. I still say that if Kim ever opens her a practice count me in.
My muscles are sore, something I haven't felt in a long time...a good thing. It means I building back up.
Talked again to NG and come to find out the guy coming over is one of the producers. They have been so nice.
Sorry, maybe mood swings are part of this. Denise knows though that if I make a decision to say enough like I did almost 5 years ago I will stand by it. She said that my B17 is out of date, but I don't see a date, then again, I don't speak Spanish, lol. I should have tried it years ago but the molecules kind of worried me.
Beautiful day today, I got started about 7am. I helped mom with some BPOs, which I enjoy doing and then came home and started painting the bed on Big Ugly. Shirt off and loving it, all but the pain. I managed to get a bit of a sunburn, get some of that pretty chemo color off, lol. I did figure out pretty quick the neck should have been covered, lol. I do have some feeling in my hand now, closed my finger in the garage door, hurt for a minute, but not too bad. Talked with National Geographic about next week and setting up the interview. The show will be on A&E channel. They are doing a bunch from coast to coast then the producers will pick which ones. Not sure if they use that interview or if they will do another just for the show. If seems a bit different than Fox and Newsweek done.
This stuff that I'm taking for the neuropathy isn't working even though I am up to 600mg twice a day. It is so embarrassing to walk and the longer I am on my feet the more intense it gets. I meant to call Ruth and see about Lavitra but forgot to call early, usually that is the only time you can get her. That lady is busy.
I started three days ago taking B-17 in the form of Amygdalin, 1 pill per day. I just now told Denise. The directions are in Spanish so I figure to be safe, just 1. There is one to look up, lol. I also have been taking my Tumeric Curcumin, 2 capsules a day along with my Ginkgo Biloba (blood thinner), 1 capsule per day.
My mouth is trying to make saliva again, thank God.
The leg is scabbing over where I scalded it but I noticed something, the CTCL is coming back with a vengeance. That would make sense since the chemo has pretty much rendered my defenses obsolete. I really need to take a few NBUVB treatments but I also really need to check first to see if it will cause a cancer on my neck since it is vulnerable. I don't guess anything is ever easy is it? I'd say I'm in a pickle. Wouldn't that be strange to heal on cancer and let the other get you. I may just have to return back to Zic & Greer at Vanderbilt. This stuff is everywhere, kinda like MasterCard & Visa, lol.
If I could get rid of the Neuropathy and if I get some kind of energy and if I get a hold of the CTCL... oh wait, there are a lot of IFs there, lol. Smallest word in the dictionary with the largest meaning.
I slept for 10 hours straight before Denise woke me up for breakfast. I sat up maybe an hour thinking what a beautiful day to get more done, but the will and the body differed. So I came back to bed to rest just a bit more and I fell asleep again until I was woken up again about 4pm. My throat was e4xtremely dry yet it feels like a blob of puss obstructing the airway and I feel like I have a temp. I haven't been able to check because I had kept drinking to alleviate the dryness and pain.
The few times I have walked, the pain is still intense in my feet. The numbness has went down in my hands and where I cut an scraped them putting up the garage door I feel pain, a good thing. The numbness in my feet has slowly went down even though the pain is intense... hard to explain but those who have had or have this know what I am talking about.
It's 5:30 and I will probably go back to sleep again. So tired.
I woke up early with minimal pain from the neuropathy. It didn't take but a few steps until a slight pain started in my left foot. Me and Denise started on replacing the garage door. We got it up but nowhere complete. Between the pain in my feet and fatigue we stopped after it was secure. I figure I gotta start somewhere building up strength and endurance. Beautiful day today.
The dosage of meds for the neuropathy increased today to 600mg twice a day. If it continues to not work I'm considering asking that we try a different med called Lyrica. I do pretty well with my balance but holding or walking takes a bit. The scalding on my leg is slowly healing and I now get a second opinion before jumping in, lol.
I noticed the CTCL beginning to spread about. I think I will ask about doing a few treatments with the NBUVB to back it off.
I got up early this morning and somehow that just didn't last, lol. After talking with Sally and hearing how she elevates her feet to help with the neuropathy so I tried it and it worked to some extent. It got it out of my thigh muscles but not my feet. Funny, I know how cow feels. I can walk up steps pretty easy but not down the, lol.
I was tired I guess but with such a beautiful day I ended up getting a battery and putting it on the tractor. Denise had done said no about changing the garage door, lol. Helped mom with some of her stuff and researched Cabins for mine and Denise's 21st anniversary coming up soon. Done some other odds and ends like gave a mineral block to the cows and got my tags renewed for the bike. I can't ride it yet but that is one of my goals, to ride more this summer. There is a good 2 days worth of polishing the chrome.
I think if it would stay pretty I could heal faster, that of course is dependent upon my feet. I want to gain but not gain any more fat than I have to. I have high hopes for tomorrow in what I get done.
I talked with a lady today that her husband is being tested for CTCL, a Non Hodgkin's Lymphoma. I hope he does not have it. If he does though I told her not to worry, I was diagnosed 07-01-2005, my oldest daughter's birthday.
Patty (my cousin) came in from FL the other day and said she was preparing her for the worst when she saw me, she was shocked pleasantly. Patty, Show your mom Billie this picture so she will know I'm ok and tell her I love her.
I woke up this morning with my upper legs feeling like I had ran a marathon. My thigh muscles ache and pain meds have no effect on them, I tried a Loratab with no results. Going up steps isn't as bad as going down them. I more or less walk down them with my arms on the rails. The pain is back in my feet. The dosage is up to 400 mg twice per day of the Gabapentin so one would think the pain would either be gone or decreased, yet it increases. I've also gotten to where I get up fast and have head spins and loss of balance, but it usually doesn't last too long. I'm still numb on my left forehead that comes and goes. Sitting down, getting out of the car or chair is becoming difficult.
I'm doing the last week of the patch and by the end of the week I will be done with them, thank God. I have pills waiting but probably not enough to finish the tapering. I think however that I have enough to get me though til Monday. Ok scratch that, Denise said I have 2 more to go after this one.
My hair is coming in good though. The front however is fairly thin. Denise said I look like The Transporter, lol. That beats Jack Nicholson, lol. My beard is full now where I have hair. You can see the outline of the radiation and where they hit it. So strange. It is suppose to be pretty this weekend so maybe I can begin to rebuild my muscles. I would love to ride my bike but I don't dare, I'm not even sure that I can hold it up.
I've went back to taking Ginko Biloba for my blood thinner and Turmeric Curcumin which has a lot of good qualities. If I can get my system clean I will start the B-17.
Denise said she finally got help with her Blood Pressure today which takes a lot of stress off. I know what happened when I ignored mine. Funny, I too said that it makes me work faster and harder and it did, for a while. Definitely nothing to mess with. Denise fills in all the things I lack as a person. I really do not think she knows how much she means to me and the kids.
Beautiful day today though. I put out a Sulfur Block to the cows and got chicken feed. I went by where she works and was going to speak with Rama about her Blood Pressure, but she promised that she would do it herself. I received my new garage door and hopefully I will install it this weekend. That should be a real test. Maybe clean up a bit around outside if I get that done before National Geographic which is coming they think next week for the first interview. Right now it looks pretty bad.
The scalding I done on my legs is tolerable today and finger healing quite well. The skin on my feet look bad but I don't feel it, just the bottoms. Note to self, try feeling the warmth with arms not hands, lol. All in all, a good day. I've seen better, but I've seen much, much, worse.
Busy day today. Me and mom went back again today to finish what we started yesterday with the proper supplies. She drove all the way. We came back and I went to Allen Surrette Hardware and bought Denise 2 pieces of old Corning glass cook wear, the one that was missing was the one she wanted. Went to the office for something... don't remember, lol. I got on the computer and work some more on it, changing the report from a long time ago.
Patty came in with her daughter who I didn't recognize. She was tall and I guess I thought she should still be little.It was good to see here again.
Spoke with the lady from National Geographic about setting up an interview next week. Hopefully by then I'll have some decent hair.lol.
The medicine for the neuropathy is failing slowly, I'm not sure why, even though the dose has doubled.
Watched American Idol, took a bath (cooler one, lol) then got on the computer. I thought I'd be smart and put some of the cream from the Amish store on where I burnt my legs and feet... wrong more. I tried blowing them, washing off the stuff and finally went for a pain pill. Here it is 45 minutes later and it has backed off. Now maybe I can get some sleep. Pretty pathetic, eh? It's going on 3am.
Been a long day. Me and mom went to do BPO in Knoxville. I busted my butt going around back but I'm using snow as the excuse, lol. Not to be outdone by my own ignorance, later tonight I ran a hot tub of water. There is a moral in this story, never test your temperature of your water with neuropathy, lol. I scalded my feet, especially the left one which doesn't hurt, it's the rest of the leg that does, lol. Not my day for bright moves, lol.
The dose of medicine for the neuropathy has now increased from 200mg to 400 mg two times per day... it has not stopped all the pain. My balance, despite a brief embarrassing moment, is decent though.
I have some teeth that are either acting up or as I come off the patch, I'm feeling them.
Charlie invited me to go to Yoder's Market to get some food this morning. Most of what they have is good Amish products. After that we went to Office Max where I bought my chair for the computer. I've stalked this chair waiting for the sale price. We went to Western Auto and Sears and the to Auto Zone. I got some stuff I needed, plus some I wanted.
I ended up talking a nap, lol, something I have never done until now. I got some mints and forgot until today just how careful to be. I couldn't get the wrapper so I took my knife and cut it along with my finger pretty deep. Lucky for me...no pain. I didn't even realize I had cut it until I saw all the blood. I guess Neuropathy has its benefits and drawbacks, lol.
I actually had to push the box up the sidewalk and steps, through the house. At one time, I could have carried this and more in one hand. Now that is kind of depressing. I have soooo far to go for strength. But I got it done. So I'm typing from my new chair tonight. I managed to semi water the plants in the Sunroom, the Banana Plants have had it rough and I actually lost one, my first loss. The Lemon Tree is also a bit for wear as well as the Palm Trees.
Tonight, despite the medicine for the Neuropathy, my feet are hurting. I'm not sure I understand this yet. Extremely painful. I would take a pain pill but they have no effect on the pain, so it is useless to take them. It is unusually heavy tonight and my fingers don't want to type.
Tomorrow I will try for my longest solo drive, provided the weather complies. I need to begin to push myself...if that is possible.
I spoke with a friend who has suffered this for a long time from Neuropathy. God bless her, she is always optimistic. She is such a great lady who has had way more than most, but remains so pleasant, helpful, and kind. She is one of the strongest people I have even known and one of the nicest. I am so fortunate to have her as a friend, one of my best friends, Sally. We share the same Non Hodgkin's Lymphoma except she has had it longer and fought it harder than I have.
