Update on Dad for the family

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.

Megan made this video and poem:

03-10-2010

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.

Dad's stroke?

Mom's wishes is that I remove this...and so I have.

03-09-2010

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.

03-08-2010

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.

Tomorrow I have to get started on the taxes.

03-07-2010

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.

03-06-2010

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.