It is "black Friday". I'm not really sure what that means anymore. I see in several advertisements that it now starts at midnight in most stores. I guess it's like gambling, everyone wants to be the first ones there so they can get the best deal. I went a couple of years ago (three hours after the doors opened) just to see what the fuss was all about. If you want to feel like a herd of cattle standing in line for the food, then it's for you. NOT for me.
Frank, Zack and I decide to go together today for his radiation therapy. We must be there at 8:15 am and then followed by blood work. We hope that the guy calls us while we are there to see the truck. We are all in good spirits, ready to handle whatever happens today. I (again trying to be the cheerleader) tell both Frank and Zack that we must just go with the flow of whatever is to be today. No expectations, no anger, just deal and make the best of it. We are all in agreement.
We arrive to a skeleton crew at the radiation department. Always very nice and cheerful, they greet Zack and bring him right in the back for treatment. Frank has stayed in the car, there is no reason for a "crowd" to be there (as Zack puts it, he doesn't like a lot of attention when doing this). I tend to calm Zack down faster when he is upset, so it's a good plan just in case he needs a transfusion. He finishes with his treatment and we are to go up to adult oncology and hematology on the third floor.
Zack and I step out of the elevator onto a large waiting area the length of the building. The chairs are all laid out in rectangular patterns, each facing another. There is a large television at the end of the area, with a shelf in the middle of the room acting as a divider. The reception area is at left of the elevator, but somehow it is confusing as to where we are to go. Staff is running around when one young lady in scrubs hears me say Zacks' name and says excitedly "oh, I have your chart, follow me." Immediately, the young man at the reception desk says, rather abruptly "NO, I HAVE HIS CHART!". Zack and I look at each other and then at the young woman, she, looking embarrassed, says "Oh, I guess I DON'T have the chart". She asks us to have a seat and will be with us in a moment. Zack and I sit across from each other and looking around, I mumble to him "weird energy!", he chuckles and says "ya think?" I comment that the receptionist forgot to shower, his hair long and very greasy, clothes all wrinkled and the attitude on top of that, I almost got up and took Zack out of there. What a difference between the children and adults. Yet everyone is going through the same thing. Why should anyone be treated any differently. Do (as Zack reminded me he will be next year ) 18 year old and older be different? I felt better when I saw one of "our" people with another patient Zack's age. She gave me a hug, looked at Zack and commented on how much better he looks. The nurse takes his blood without having issues finding his vein (very unusual) and within thirty minutes we get the good news. NO TRANSFUSION!!!! We were so happy, we had found out when you go into the hospital for a transfusion they keep you there eight hours (in the clinic it takes about three).
We head out and meet Frank at his truck. Still having not heard from the guy selling the truck, we go ahead and grab some breakfast. An hour later, still no word.During breakfast and on the ride to Asheville, I called two of the case workers about Big John (Franks Dad). I tell Amanda (Hospice social worker) that I will be in Asheville on Tuesday and insist on meeting with the two doctors that are releasing him. I tell her, if they are going to release him, then they must assume responsibility for his care and should anything happen to him, Linda and Billy in the event he smokes and blows up the house with them in it. I also tell her that I will go to the news and let them know what is going on. (a few months ago a woman was smoking while on oxygen and blew up her apartment and nearly killed the people around her.) I told Amanda, when John was in HER facility (Elizabeth House, a Hospice Care Facility ) we were visiting him, he started to light a cigarette with his oxygen on and still in his nose. I had grabbed the lighter and Frank grabbed the tank. We then brought everything to his nurse. Amanda agrees to get the Doctors together. She "reminds" me that John is the one insisting on going home, and I "remind" her that this man also doesn't remember everything all of the time due to hardening of the arteries. I also talk with the case worker in the nursing home and tell her we are going to try and get him to agree to stay for another week. She says she will do whatever she can to help us out. She says "this is the hardest case I have ever seen, he is a selfish man and doesn't care about the safety of anyone around him." she offers her apologies that she can't do any more for us. Legally everyone, including our hands are tied.
Zack comes up with the idea of the three of us going to see him. He says "Mom, maybe he will listen to me" I ask him if he REALLY wants to see him, he tells me he is ready to see him and thinks that he has a shot at Papaw "hearing" him. He also thinks if we stall, the truck guy will call. We arrive at the nursing home, John is not in his room, we know exactly where to find him. Sure enough we go up to the second floor patio and there he is smoking. At least he didn't have his oxygen on him. They had set up his room so that he can't leave with a tank. He is thrilled to see Zack (this is the first time since he lost his hair). Immediately the guilt sets in. How can we love someone and be so angry at the same time? My emotions are all over the place. I feel like I'm be deceitful, but also know (without being overly dramatic) that it may possibly save lives. Many have questioned why I'm involved. Why not let Frank or the other kids do all of this. The answer? I know what I'm doing. I've been here before and time is of the essence. If we had time, I would let everyone else handle this and when Linda came and asked for my help, I would do anything for that woman. She and her son are the reason he is still alive, they took care of him for all these years and I for one will not let her down. Anyone that knows me as a friend, knows I would do the same for them. We have a nice visit when John brings up going home. I tell him we may need to push it back a week as the bed and everything is not set up yet. He then looks me straight in the eyes and says I am going HOME and nothing or no one is going to stop me. Zack tells him that he is looking so good and he would really like him to stay in the home. He say's I cold come see you when I get my treatments and you would still be around, because they take good care of you here. He tells us again, no one does anything for him, he does it all for himself and will continue to do so. the discussion became heated and I won't go into those details, it's not pretty, it's down right sad to witness. A son trying to get his fathers respect, love and understanding. It never has happened before, why would it happen now. Zack witnessed this and has a new understanding of his father, though he doesn't quite grasp it all yet. We leave a couple of hours later. Give John a big hug and kiss and are on our way to a more peaceful day. I am exhausted, not physically but emotionally. I call Linda and fill her in on the day. I tell her I have one last move and if that doesn't work, he will be coming home. She is to meet with me and the Doctors on Tuesday . If he does come home, she and Billy may need to look into staying somewhere else, perhaps if "they" see he is alone, he could get the 24 hour care he needs.
We head home without a call, text or email from the truck guy. Zack is resigned to the fact this may never happen. Once home, I lay on the couch and take a nap. Zack and Drake are in his room playing video games and just relaxing, while Frank is outside reading his book. Once I wake up I remember I need to make a bank deposit, so I run out and while our stop at the local department store to see if I can find some special gifts. Excited, I returned home with Gifts for my niece and nephew and a few odds and ends for stocking stuffers. With Christmas coming close and us not sure of our daily schedules, it's best to get done what we can, when he have a chance. When dinner is over, I find myself with a sore throat. Zack gave himself his shot (still a routine twice a day) and was heading to watch TV. Frank was watching one of his blood and guts movies so I crawled in bed and within minutes was sound asleep.
It is now Saturday morning and I'm only awake ten minutes and managed to piss off the "guys". Frank, who woke me up with the TV too loud who could have simply said "I'm sorry I didn't realize" and Zack because I asked for the number of the truck guy. He didn't want me to get involved, but after two weeks of this, his emotions every time a change in meeting and me wanting him to get a truck so I can have my car back I am ready to step in. Within an hour we all are talking to each other and apologizing. My sore throat is much better. I realized it was probably because I was talking soooo much yesterday my voice was tired. (those who know me are laughing hysterically right now). Frank and I start to look for a truck on the internet. This time we decide to go to dealers instead of individuals. We have a better chance of finding a good truck as well as recourse if something goes wrong. Three hours later I find a bright yellow Dodge in Asheville, across the street from that is another truck he wants to look at as well. I call the dealership and they are closing in an hour. Frank assures me he will take Zack on Monday morning for radiation and then go and look at the trucks. We have a plan in motion! We are all excited and can now move on with the rest of our day.
Zack (after asking 1000 times... teenager remember!) brings in the Christmas boxes. Frank goes up to the water feature and decorates the area. He also puts up the new LED lights we bought for the trim of the house. I am still pretty tired from yesterday. I was planning on going to Jamie's to help her with her leaves (also to check out her new house she is renting) and then go to see Mom. I decide I need the day to be "lazy" and rest. So off and on, I watch TV, play games on my laptop and nap. I start to set up the tree and then chill again. It's so nice to have a couple of days to rest after all the emotional crap. I so look forward to Tuesday, one way or another a decision will be made with regards to John and I will know that we have done everything in our power to help.
It is night time and Zack gets a call from Chris ,they are having a campfire at his house so he heads up there.. and no Chris. He returns home, sits in his room and says "he wasn't there!" I partially laughing and yet my stomach in knots, I tell Zack he needs to work on his communication skills. He tells me not to worry about it so much. I sit down and tell him how I'm always "trying" to ensure he is okay, happy and safe. I wish I could relax and KNOW that everything is going to be fine, but especially more so now, trying to find the balance is one of the hardest things I've ever had to do. When his moods are so extreme it's hard to figure out what our next move should be. At least we can handle it as it happens and we must never try and figure out what lies ahead. One thing all of this has proven, we are not in control and must adapt with what life throws our way.
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