Another hard day: Arrington and Lil

When we walked into Arrington yesterday at 10:30 AM yesterday, we knew that we would be there most of the day. Dr. F is out of town for a couple of weeks and had left orders before he left. When we checked in, I asked if we should go to the blood lab while were waiting to see the PA and the nurse. The girl at the front desk told us that there was no order for blood work this week. I told her that I knew we were here to check to see if his port had opened over the past 7 days. Whether is was open would determine if John had chemo. She told us she would check, we went to sit until we were called. We waited. And waited. And waited. Around 11:15 I went back to the front desk and asked the young lady if we could just to ahead and have the port checked while we waited to be seen by the PA. She got on the phone, could not talk to the nurse right then because she said they were "slammed" back there. So, we waited. And waited,

John had been fasting, in case that is what they wanted for his blood work. We found out that he doesn't need to come in fasting. It was now somewhere around 12:30. I went back to the desk, explained that John had not eaten and I needed to tube feed him and did they know when we would be taken back. I also explained to the young lady that the main reason that we were there was to see if the port was open. I pointed to the blood lab and explained to the young lady that we were 20 feet from the lab, they did not look busy and could they just get us in there real quick to check the port.

One of the nurses came out to take us to an examination room so that I wouldn't have to feed John in the public area. She told us she was sorry that they were running behind, the PA would see us and we should wait in the room. I explained to her that we just needed to check to see if the port was open. That was the reason that we were there. She said that she would look into it and left the room.

I fed John. The room felt cold to John and very hot to me. I walked over to the chemo treatment area to get some blankets. I am starting to know my way around the place, pretty well. I left the examination room door open. After a while, someone shut the door. Around 1:15, I opened the door again. It was feeling claustrophobic in the room. A few minutes later, the PA stuck her head in to shut the door. I asked her to leave it open because the room was stuffy and I was feeling claustrophobic. She told me that she had to talk about some patient, out in the hall, and she could not have the door open in case we overheard her. I asked if we could go have the port looked at so that we could start chemo. She said she would be back in soon.

The nurse came in to do the preliminary questioning before the PA came in. I again, asked if we could just go over to check the port while we were waiting since we had already been there 3 hours and this chemo took about 7 hours to administer. She said that we would have to wait for the PA. The PA came in. She started asking John questions about how he was doing, how much he was eating and how he had been feeling. He told her he felt fine, better than a long time, he told her that he was eating a lot and that he had no pain or discomfort. I butted in to correct some of his answers since they were totally incorrect. She asked me if I had a problem with her. I told her no, I just wanted her to have the correct information. I said right in front of John that his answers were incorrect. She attempted to put me in my place by telling me that John is a doctor and that medical protocol was to talk to the patient and then to ask the family member if there is anything they wanted to add. I zipped my lip while she examined John and she continued to ask questions. She did not ask me if I wanted to add anything. I explained to her that Dr. F wanted us back in order to see if the port was open and if it was, to get chemo. If it was closed, he has written orders about having a surgical replacement and I told her what doctor that he had it set up with. She told me that none of that was in the orders. Again, very eager to put me in my place. I was not a happy camper with her bedside manner. I became very quiet.

They then FINALLY sent us over to have the port checked. The very sweet lab tech found blood immediately. We were then instructed to go back to see the PA again. By this time, I had had all I could enjoy from this visit. I have the managing nurse's number in my phone, I paged her and asked if she could come to talk to us. By the time she got there, we had been told that all was great for John to get his chemo but, since it was already after 2, it was too late to start and we would have to come back tomorrow for the long treatment.

When Christi arrived, she escorted us to a conference room so that John and I could tell her about our morning and part of the afternoon, at Arrington. She didn't really like what she heard and told us she would be right back. Five minutes later, she came in and told us that John would be getting his chemo and there would be a nurse that would stay a little late to make sure that he got what he needed. She also told us that we would not be dealing with this PA again. Apparently, the PA has put in her notice and today was her last day. She does not like working with cancer patients and their families. That was pretty apparent to me when we were with her.

I went out to get a late lunch for us. When I got back, Dr. F's nurse tracked me down to give me a few syringes. She explained to me that since John had this clot, we now have to give him a shot in his belly every day for the next 6 months. She had already called the pharmacy to see if they had the injections in stock. They did not so, she gave me enough to use until the pharmacy can get them in. She was very nice and very helpful. So, this is a new thing added to the routine. Shot in the belly everyday, six months. OK.

A nice story to add, Christi told me that she had worked with John many years ago when he was delivering babies and was doing surgery. He usually had most of the prep work done in the room rather than the surgical area like a lot of surgeons ordered. She told me that she didn't like it very much and once asked him why he did it that way. John told her that it was much easier on and more comfortable for the patient by following this protocol. She said that then, she got it. She told me that he was her most important teacher in the area of working with the patient to make a stressful situation easier, if at all possible. She was so complementary of John. I am always so happy to hear these types of stories. Since I have never been closely associated with his career and he has never been one to socialize a lot, with his colleagues, I have not heard many of these until his retirement party and now, being involved with the hospital and Arrington. Several of the nurses that administer the chemo know John and have worked with him. They all are so kind and always compliment how he has always treated both patients and nurses with the upmost respect. She told me that she was really glad that I had called today's problems to her attention and instructed me to call her sooner if another situation pops up, along the way. She told me that when she gets sick, she wants me to be with her and be her advocate! I was very relieved to hear her tell me this. I know that I can be very abrupt and certainly can be tenacious when I don't think things are going the way that they should. I always worry about who's toes I step on, afterward. She assured me that I did the right thing and that we should never be put off like we were today, ever again. Another example why I am glad that we are here. I don't care where one is, or what facility is out there or how famous they are, medicine is not run the way it used to be. The government and the insurance companies have made sure of that. I guess that how young doctors are trained is different now, as well. At least here, we know people or people that we know, know people and it is easier to maneuver around this nightmare that we call patient care, or managed care, these days. By the way, the computer system is still giving them lots of problems in the out-patient area. The system is set up for in-patient information.

We left around 7 PM. We came home and collapsed. We found something to eat and went to bed. The day had been hard and the day before had been even harder because we had our sweet Lil, our 12.5 year old Mastiff, beautiful and nation wide show dog, put down. She was born to us. She was Lucky's mother. The night before we had to put her down, she was very sick and running a high fever. I had soaked her pads in alcohol and packed her with ice packs, the fever did not come down. I called Allison, and as usual, she was Johnny of the spot. John, Allison and I could not lift Lil with the stretcher. (She weighed probably somewhere around 175#-180#.) With John's clot, I didn't want him to try to lift her because I thought it could be very dangerous. I don't have the healthiest bones on earth so, I called our next door neighbor, Dr. David McCartney. He came straight over to help us get her outside so that I could give her a cool bath with a water hose to help get the fever down so she would feel better. Thank you, David. Mission accomplished. Allison and David carried her back into our bedroom and put her on her nice, foam bed. Lil went to sleep, slept very well all night, no high fever for the rest of the night. On Wed, our vet, Dr. Carl Clary came over to put her down. The crematory people were here before Carl arrived. We agreed that though we liked one another, we didn't want to see each other again for a long time. This is the 3rd time in 4 months. Lil went very peacefully, her head in my lap. It broke our hearts, John, mine, Allison's and the vet, Carl's. It was absolutely the right thing to do and it was her time. It is just a difficult process to go through.

Anyway, this is an interesting journey. I have learned that there are days when we both feel absolutely nuts, days we can't remember much, days when our actions and reactions are different from what they would be under normal circumstances. We are quite grateful to those who help us and those that understand when our behavior is unpredictable. Thank you Allison, for monitoring us in that area and helping when I am in flip out mode and when John is in La-La land. Same to you, Johnanne. You will show up at midnight, if I need to talk. I will tell ya'll one thing I have learned beyond anything else, the saying about the handful of friends is absolutely correct and sometimes it is a surprise just who those are. Thank you, Pat G. For what, you are aware. Thank you all for your thoughts, prayers, emails and generally caring about us.

So far, John has not gotten sick. He is his usual fatigued person. His son, Charles, from Austin, will be here tomorrow with his daughter, Frannie. Charles is the one that gets projects done. We definitely have some of those that neither of us can do. I think he may stay until Tuesday or so. The longer, the better, as far as I a concerned.