02-12-2014

   Mom has been back home since Saturday (8th), started out rough but so far so good. Denise worked her butt off when mom went into A Fib the first few hours of being home. She got her back in adjusting mom's meds, I sometimes forget just how good she is at that stuff. Denise stops in and checks mom's vital signs out, gives mom her meds, and leaves instructions for me before she goes to work. At 10am I call her with mom's BP and heart rhythm and Denise says what if anything and how much to give. I fix or buy breakfast, fix lunch and dinner for mom. Megan stays the nights and sleeps during the days at mom's. She attends mom's needs. Despite the lack of faith a family member had, Megan has done an excellent job, she just needed the chance to prove that she can do stuff. I dare say nobody could do it better. She is hard of hearing not stupid, and if there was ever a doubt there isn't now. This same family member, who is a nurse sent hot dogs over yesterday! Who feeds Hot Dogs to a person who has had A Fib, BP problems, and Congestive Heart Failure, especially when they are a nurse. I played the role of a bad guy and told her she couldn't have them, too much sodium content in them.

  Now we stumble upon a not so good thing, I have caught a cold of sorts, feels like flu or pneumonia. I came home early today and just laid, leaving Megan there, which I know mom was in good hands. The Hospice nurse and case worker came, both were nice, the Chaplin the other day, which I didn't meet but mom and Megan said was nice. Mom can now turn herself too!!! Denise even had her setting up for a brief period. I know mom is terminal, I'm not in denial, but I also know that we leave no faster than God calls us, and in the meanwhile, I want her to enjoy while she has. Selfishly, I'd keep her from now on. She wants to walk again, and maybe she can and maybe she can't, but only time will tell. Meanwhile, I have to have a little faith, faith that if it is is His will she will, and if not she won't. Either way, we have to try. It is 220am, and I can't sleep. So I write. I think even my thoughts hurt these last couple of days. Read Sally's email, she is back home, she was in the hospital, but on her way to recovery. It occurred to me today while I was feeding the cows. We are all terminal, but only the lucky ones know it. We feel the slip each day, day by day... and that makes us enjoy what we have more than want what we do not have. Sometimes blessings come through pain and tears.        

02-06-2014

  It was a long day, seemed like everything kind of crashed together, and some things didn't have to. I was tickled that mom's equipment came in today, until I saw the bed. The 2 young men that delivered it and set it up were nice, which was a plus, but then the bed. I mulled it over back and forth, talked it over with mom and she thought the same as I did, it should have wheels. Kind of flimsy looking too. So I started what seemed an endless search for who was in charge of mom's Hospice service to request wheels. The whole bed seem to snap together so it shouldn't have been a big deal to add them but it seem to grow into a big deal. For that matter, figuring out which division mom comes under. Meanwhile I was all everything is great to mom, she never suspected a thing. We still aren't sure who supplies what, us or Hospice, but if mom comes home tomorrow we will be. A lot of the day was spent fighting over a bed.

 I spoke with Pulmacare (spelling ?) and they would not provide mom a bed with wheels, a guy named Mike said they didn't supply Hospice patients with beds with wheels, but they did have them. Hospice said they thought all beds had them while this guy said not for Hospice. He was rather belligerent over the phone and I guess thought I was just talking when I said I would get them to look elsewhere. I never threaten. I called McFarland Medical, who said they supplied beds with wheels, but would have to have an order from Hospice. I told them expect a call. The lady over mom's division of Hospice was nice and when I told her Pulmacare wouldn't but McFarland would, then called to have them pick up their stuff and was ordering mom's equipment through McFarland Medical. Tracy had our backs on that one and understood when I told her it would be better to have one that moved to clean up in case mom had an accident. Shortly after Tracey's call we got a call from a lady at Pulmacare, asking if we would be available to swap out the beds. I told her they could call and come after their stuff whenever, but it needed to be gone before the new company brought their equipment. Then she said they wanted to swap beds, if that was ok, and boy how I wanted to say no. I told her that with Mike's asinine attitude that Hospice was changing over the order and that it was up to Hospice, which the lady said she left it up to you. Due to the nice young men who brought the equipment, I agreed. Note this: If I had based it on this guy Mike's service and distant attitude I would have said no. If it was that Pulmacare wanted to do the right thing, when they were forced to, I would have said no. I got respect for the fact that McFarland Medical was doing the right thing for their customers because it was the right thing to do. As for Mike, I hope you will come upon someone like you when you really need something, maybe then you will become a decent person.

  Meanwhile, tonight I try the new cream Denise found that we had left over from God only knows what. I read about it last night, ain't crazy about the side effects, just worn down. It is called Triamcinolone Acetonide Ointment, and still in date. I looked it up and it is used for many things, of which is NHL, CTCL. I am at the itching that can't be ignored in some places and into the pain in others. It is the worse I have had an outbreak yet, over 75% of my body, so if this brings some comfort so be it. I go the 21st to see a new doctor Sally recommended, she has the same kind of cancer. Its in the T Cells so not a whole lot I know left to do, and Sally is not only a victim of this, she is a retired nurse as well, and has had it longer and at a more advanced stage. I didn't hear from her last night, the night before last she was sick and had a fever, if she don't email me tonight I'm officially worried, more so than I already am. We have been friends for years now and I briefly was friends with her late husband, who also had this stuff, and a retired doctor. I know she has an appointment with Zic at Vanderbilt soon, just don't remember when. I like Zic but that is a long drive so I'm switching to a doctor at UT.

  Been a long day.           

01-27-2014

It has been a long week, seems a long month. I have an appointment with a Dr Buskell that Sally recommended for the Non Hodgkin's Lymphoma next month. I'm hoping he can get it back in line, think this is by far the worst it has ever been. Maybe stress? Add to that I finally am getting a break from passing blood, either that or I ran out. :) Once again, fighting a yeast infection in my throat. I fell asleep last night, slept for over 10 hours. Denise gave me a shot this morning of B-12, not sure I took one last week, but my mouth didn't get sore, so who knows. If my blood is low that should fix it if I remember to get a shot. I hate Pernicious Anemia.

  Now that we've got that over, here is the stress. Mom took a turn for the worse. She went into A Fib and her BP dropped, I'm still wondering how her heart could fluctuate and go as high as 162 beats, yet BP go low. Then her temperature started. When we left she was ok, not good but not bad. We were at Lowes getting keys made when we got a call from UT, the nurse said we might want to come in, mom was bad. Mom was dying. We headed that way fast. While we were going that way the doctor called and asked what if anything we wanted done, mom requested DNR. I told him I know her wishes, no DNR, Life Support, ICU, or CCU... but she left it up to my discretion other than that. I asked what he could do short of her wishes. He said maybe some meds and I asked him to do whatever he thought. He was honest and said it might not work and I said doing nothing surely won't work, some chance is better than no chance. As we got closer another doctor was called in and he asked what was to be done, he gave me some options he saw as a viable solution and wanted to know where we were at. We were 15 minutes out and I said to do it. He asked if I was asking him to use the meds, I said no, I'm begging you.

  We got there and stayed with mom, watched her chest actually move from the hard, fast, yet erratic beating. She gasped for air even though O2 was there. She was though coherent, and they had pain meds so she wasn't in pain. No pain was a good thing but being cognitive, well, I've been there before and it is scary. To smoother is scary and to feel your heart beat fast and uncontrollable is scary too. I don't care what one's beliefs are, when that time comes you feel helpless and scared. We stayed as long as we could but eventually left and come home. Matt, Misty, and the kids drove down to see her in the snow from Johnson City. I saw Misty's eyes, but she didn't cry, not in front of mom, but I've saw those eyes before. I remember Misty visiting me when all went south just a few short years back and said I looked good. I knew through her smile her eyes said I looked just the opposite. :)

  On the way out, and I think she meant well, the RN asked why I did what I did.  She said that I had prolonged mom's pain but authorizing the doctors to step in and she didn't understand that. She was sincere, and I could see that she was, so I answered her. I told her they thought I would not live to come off the 12th floor above a few years ago, but I did, and some never gave up on me. They thought I would not live through the heart attack. Well, that one they kind of got right, but God didn't let me stay. I can't count the times I quit beating in my sleep and Denise came and brought me back. I told her that I have no fear of death, I've seen what comes next and there is nothing to be afraid of. I told her that is my mom, I've had her 53 years now and I would love to have her another 53 years, and that wouldn't be enough. I saw her sacred and smothering, her heart beating out... I remember that feeling. I said not you nor I nor the doctor, hospitals, or fancy equipment can changed God's mind or refuse Him when He says it's time to come home. But if He has allowed us to invent this medicine then surely He meant for us to use it. I said I wasn't trying to keep mom from getting to Heaven, but trying to ask God to allow us just a little more time. I'm fully aware that she is terminal. Then I told her, consider it a selfish move on my part. There was also at least one more who was a close family member who also disagreed with my decision. 

  The next day we went there, I had no sleep at all, and there, semi sitting up in the bed was mom smiling. We talked and she already knew she was dying. I told her I stayed within her wishes, borderline, but I stayed within them. Mom thanked me. One of the doctors came and we walked outside, and he said we didn't do life saving measures, just applied good medicine and care. He was happy. We thanked him for his hard work. On the way back in the RN who asked why I would do that to mom said, It was "Miraculous". I told her yes it was, just shows you have to have a little faith. A little later on another doctor came in and we talked, again, he was happy and glad we made the decision we made. We thanked him too. Then we thanked the nursing staff. We then thanked the one who made it all work... God. Over and over again. The RN that questioned it, I told her she knew part of mom's wishes, but not all of them. Mom said she didn't want to die in the hospital, she wanted to die at home. Maybe I can help give her that and maybe not, but I have got to try. Me and Denise came back home and prepared and moved furniture around in preparation for mom coming home, she will have Hospice. Everything is ready for them to bring the equipment in.

  Today mom is feeling fine, hard her 1st of 10 radiation treatments on the largest tumor. They cannot cure or remiss her but this one is the one that is killing her the fastest. If they can shrink it then maybe she will be here a little longer. Mom already wants to walk. That is her goal now, she knows she is terminal. Over the years we have talked about what I have saw now on three occasions, but she also has seen me fight to live and knows my stance on fighting. It is God's call, not ours. He doesn't give up on us, so we are not to give up on Him. I know that mom is terminal and that didn't change, but maybe we will get to enjoy her company for a little while longer. I sure pray we do, but His will be done. I thought of me and the rest of us that time, mom would be fine either way it went, and I knew that.     


     

1-23-2014

  Another day and mom grows weaker. Dr Kilgore called me this morning and explained a lot of things, most of which I already knew. Mom took a turn for the worse today for a while and when we arrived Annie met us outside, along with Kilgore's associate, we will call her Dr L, cause I can't remember her name. Mostly she talked with Denise on stats, sounded like Greek to me. Then she talked with me on mom's condition (s). Dr L laughed and said we had a lot of nurses in the family, I told her yep, comes in handy. I know her daughter had said they have a spare bedroom and I told her so do we, but mom wants to be home and we will make sure she has her wish. Annie said a family member questioned about if we had space for a hospital bed, which is irrelevant, mom wants to be home. Just for the record we have more square feet here than there, again, that is irrelevant.

  Tonight Megan wanted to stay with mom so I let her. She wants so very much to prove herself responsible and capable of doing what others do her age. Denise agreed and let her stay and I know she will do an excellent job. I should have left my phone there because I'm not sure the hospital phone has a speaker. We stopped at the desk and I told the RN and Desk Manager that Megan is legally deaf but can hear some with her hearing aides as long as they are facing her. What she can't she reads lips and will verbally respond. Megan is observant and smart, but best of all a heart the size of Texas. We brought Annie back and she went back home. She done an excellent job tending to mom. Matt, Misty and the kids came down too for a while. They drove 2 hours to visit 2 hours, then headed home for a 2 hour drive. Last night Annie done something called Face Time or something with her phone to Misty, Matt, and the kids... which was nice.

  Finally, to family and friends that send me messages, call. I have an old phone, fat fingers and small buttons that you have to push different times for different letters. I don't have a smart phone and see no reason for a dumb person to have a smart phone. I know right now my voice is weak but I can repeat something quicker than I can type it. So please, call and speak.   

1-22-2014

Well, been a weird day today. Annie came over and wanted to ride with me and Denise to see mom at UT this evening. On the way there I got a call from a nurse that was with a dept I had not heard of saying mom wanted her to talk with me. She said mom wanted to be DNR and that she wanted to die at home, cure was out of the picture. It just seems a bit cold, shocking, and distant, plus I didn't know her. Titles do not impress me any more than uniforms do, so I told her I would need to talk with mom, but I would do whatever she wished. Until then though I would be reserved until speaking with mom, she was selling the point a little too hard. I've done real estate over the phone, taken and given directions over the phone, but I would not talk this over on the phone, especially without talking with mom. The story was a bit different when I talked with mom, who didn't really want to talk about it much. The position of nurse didn't excite me, I know some good ones and bad ones, plus we have a lot of nurses in the family. 

  Annie, (our middle daughter),stayed down there with mom tonight and she is a nurse. She moved in with mom after dad died.Mom had asked for a second opinion and Annie will see that she has it. I promised mom that whatever her decision is that I would see it happens. So tonight she stands DNR and she wants to die at home. Denise cried all the way there and back, then went to bed with a headache. I looked at mom and asked but she got a bit ill with me, I know it was a lot for her to take in too. I told her I wasn't passing a judgement but wanted to know what her wishes are from her, and I would see them done. I didn't push though, I looked on and saw she was tired and afraid and confused. I had pushed her to try harder, and I think she done all she could, I just refused to see it.

  As I watched her laying there I saw her, weak and tired. At 85 she saw and lived as a child growing up in the Great Depression. She quit at American Enka in about 1971 for health reasons and also to raise me. In her 50s she wanted her GED, she had to go to work and never got to finish school, so she got it. We attended Vocational School at the same time when I was in my early 20s, I for electronic repair and her as a Secretary. Then she got her real estate license, while working in the office, and from there went on to be the area's biggest lady Realtor. Her dream was to be a Broker and have her own business, which we did and after UPS I worked there until the Throat Cancer. She wanted me to take over but my voice just wouldn't let me, still she stayed there until she got sick.

  She worked hard all her life and made a lot of money, but gave most of it away as she made it. Her and dad helped me many times, helped our kids, her daughter, sister-in-law, strangers... you name it. People would ask how old she is and then remark that she is rich, why is she working, if they only knew. She made enough money to be rich, but she isn't. Dad was the same way, soft hearted as they come. Mom though could piss me off quicker than anybody, but don't all parents, lol. No matter what I done, her and dad were there. If I didn't believe I could she made me believe I could, and anybody else she came across. Can't just didn't exist, not until now. Her and dad, not so much through words but actions, taught me to be a better person, a better parent. We bumped heads a lot, kinda like me and Annie do these days, but like them, I am always here. I'm not as good at it but I try. It isn't just little girls that step on your toes when they are young, and on your hearts when they are old, but boys too. I done my share of stepping, yet they loved me no less, and waited me out, and never ever lost faith in me. I saw that if they, being imperfect human beings, can love and forgive that much, how much greater is the love of God, who is perfect.

  I have kept a dry eye tonight, but that is apt to change. I will do what mom wishes me to do, and all within my power to make happen. I fight back the tears, yet the tears are not for her, but for us. Where mom will go will be with dad and with God. On more than one occasion I have stood in His presence, and there is nowhere better. But I will probably cry for us, for truly we will have lost much in this world. I say us but I mostly me me, she is the last of the 8 that raised me. Her and dad took me in as their own when nobody would, put up with me when nobody else could. The taught me what family is and how blood is thick... or at least should be. I am sad for us, yet happy for her, for she will see all that have gone on before her. No more pain, disappointment, suffering, tears, nothing but good.          

1-21-2014

   Well, it has officially been a day. Once again I have to play the bad guy with mom, she is being non compliant and that has her going down fast. I did find out tonight that the cancer area has grown quite a lot, but that is playing second string compared to her not sitting up, fluid is in both her lungs now and she is smothering. Mom says she thinks she is in A Fib, probably seems a lot like that. Anybody that has had a heart attack will never forget the smothering feeling, like an elephant sitting on your chest. I had a family member tell me that I should have sympathy, knowing what cancer and heart attack both feel like... and she said it pretty stern. Coming from a RN nurse I would expect things to be different but coming from this person I don't. I told her yes I did remember the fear, uncertainty, pain, and for that I have compassion. I have no sympathy though that I will show her because those who worked on me refused to show sympathy because they cared. I'll be the first to say that only God saves a person, but He uses people to work though usually to do it. Compassion heals while sympathy kills, it simply makes us looks good and feel better about ourselves.

  I got a call from Schindler's office today, the stuff to freeze the place off my back leaked out over the weekend and it will be 2 more weeks. They offered a referral to a Derm if I didn't want to wait, or I could reschedule with him. I asked to keep my appointment so he could look at my elbow. I don't think there is a lot that can be done, but I'd like to know what he thinks, broken or torn. (I'm leaning toward broken). I thought too that would give me the chance to talk with him about the Narcoleptic episodes and what might be after the other meds didn't work.

   Everything though happens for a reason, and I think this did. I asked Kim if she could refer me to a doctor at UT, a Dermatologist that a friend of mine, Sally, has used. She says he is good, though she still uses primarily Dr Zic at Vanderbilt. I like Zic but Nashville is a long ways to go. Sally has the same Non Hodgkin's Lymphoma, had it for longer than I have, plus she is a retired nurse. I have a lot of respect for her. We met on the Lymphoma Board many years ago. This is the first time in many a year that I have lost complete control of this stuff, and can't seem to get back in control. Almost over my whole body I burn or itch or hurt, Megan says it looks like I've been burnt. I have a NBUVB machine that years ago the insurance company bought me, well, we had to pay some too. Thing is, it can bring on Squamous Cell Carcinoma, which is what I had in my throat. I would prefer not to do that one again and this one there is no cure, only slow it down. I remember reading that it usually moves slow but can speed up. Well, I think we're in high gear, lol. If Schindler wants to see what this stuff looks like I'll show him, it is pretty rare. I think there is an ointment that can give some relief without too much collateral damage.         

uPDATE 1-20-2014

Well, it has been a while and a lot has happened. The medicine that is suppose to stop the Narcoleptic episodes hasn't worked out too well. They have curbed the events but not stopped them. I see no reason for continuing the meds, especially since its 90 dollars for a 30 day supply. I go tomorrow to Schindler to have a place removed from my back and will ask him about it. If he doesn't have any idea or want to get involved then I'll just wait for my next follow-up with Rathfoot. Also on the agenda with Schindler I will throw in getting him to look at my elbow, which also isn't healing as fast as I'd like, it may have broken or fractured. That is the same one that got heavily injured years ago at UPS and they told the doctor if he fixed it I would lose my job back then. It healed over the years but not well.

  Mom is still in the hospital, we took her last Friday to UT. Things are not looking well. Denise has ran me down there all but the initial taking of her, Charlie drove that day and I rode. Today I am of two minds. Denise said she would take me when she gets off but I would like to go earlier, which that means I drive. The cows need feeding today which Megan always helps me, or I help her, depending on perspective, lol. Denise said to take Megan to help me not have an episode, yet while that will help, nothing seems to stop them from happening. Usually I have a little warning with the extreme fatigue and stretching prior to an event. If I saw that coming I could pull off and wait for it to happen maybe. Short distances I know I can always get home, not so with long distances which seems to bring them on. Taking Megan would have no stopping effect on the event coming, and I would not want to be responsible for injuring her or anybody else.