John's son, Charles and his daughter Franny arrived today. We watched Freedom Writers tonight. John is doing really well considering this is day 3 after chemo.
Sunday, July 27, 2008
Friday, July 25, 2008
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.
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.
Tuesday, July 22, 2008
Very sad news
We decided tonight to have Lil put down tomorrow. It's been a pretty emotional night. I am off to the bathtub and to drink the chalk.
Monday, July 21, 2008
Things are looking up.
I looked back to see when the last update was sent and was really surprised to see it has been since July 3. So much has happened since then. I will recap, somewhat.
On the 4th of July, in the afternoon, John's fever got higher. I called the doctor, it was the weekend and Dr. Shalaby was on call. (The doctor that had gone to Egypt.) He was pretty insistent that I take John in to the ER. My friends Johnanne and her sister, Jan had been at the house for a while helping me with some things. Alice was also there. We gathered a few things up, Jan went home and Johnanne followed us the the ER. I called to tell Allison that we were on our way. Allison was out of town on a fishing trip. She told me when we got there, for me to go in first, tell the front desk that I had a cancer patient with me that was running fever and had been on very aggressive chemo. She said that would get us in very fast. It worked like lightening! An attendant followed me to the car with a wheel chair. Johnanne walked up about that time and offered to park my car so I could go on in with John. We were taken straight in, to Pod (was it 6 or 9?). It was all the way to the very last part of the ER and they put us in the back corner. I don't think we could have been more isolated. This was a really good thing since chemo patients have compromised immune systems and exposure to bacteria and viruses could be very dangerous. There are lots of those floating around an Emergency room. We knew the ER doctor and he was quick to get to John and start running tests that Dr. Shalaby ordered. It was not dark when we left to go, so I would think it was somewhere around 8PM. Alice knows the dogs and the house in some ways better than I , she offered to spend the night with the dogs. Thank goodness she did. According to her, the fireworks were much worse that night than the night before. The dogs were traumatized. We communicated on the phone and I was successful in guiding her to tranquilize them enough that a loud TV would drowned out the firework noises that scare them so much.
After several tests, I asked if we would be staying the night. The ER doc said, "I don't think that John will be going anywhere tonight other than to a room. A couple of doctors that are friends with John heard that he was in the ER. They were called in for other patients and stopped by to check on John. This was another experience that told us that we are in the right place and it was good not to stay at Mayo in Scottsdale. Sometime around 2:30 AM, we were taken to our room. Johnanne and I drove and an ambulance had to transfer John to the Lakeside campus. That is the hospital that has the oncology floor. The Covenant system is quite large, here. The room was small but the nurses were incredible. Johnanne stayed the entire time and went to the room with us to help get John settled. The room was unbelievably hot. If I adjusted the temperature to 70 degrees, it turned off. If I set it at 60 degrees, hot air blew out. The IV machine that was hooked up to John was very loud and kept going off about every 10 minutes. Or more often if John moved his arm. The way the room was set up, the beep was next to the head of the couch/bed on which I was trying to sleep. Johnanne had left around 3:30 AM. The loud beeping had both John and me buzzing. We were so tired, it was early morning and there was no sleeping with that obnoxious sound.
I went to the nurses station around 4:30 and told them how hot the room was and how loud the machine was. An older nurse walked by and overheard what I was saying. She said that the whole hospital was impossibly hot. I was really glad to have a backup on this. A couple of minutes later, the same nurse brought in a floor fan and helped me set it up. I was so grateful because I was wet with sweat. I don't know when we got to sleep or really, if we ever did. I barely remember but, Dr. Shalaby stopped by and told us we could go home. Dr. Phillips stopped by to visit John since he was in the hospital seeing patients. I think word passes around that hospital faster than anyplace on earth. Sometime around noon, we were released to go to the house.
On Monday, Dr. Figurrero's office called to check on us since they had heard that we were in the hospital over the weekend. I told the nurse about what meds Dr. Shalaby had prescribed and Dr. Fig. immediately changed them and put him on something else. John continued to have a pretty rough week. On Thursday, we went to Arrington to have the constant pump removed for the week. This was the beginning of his week off of any treatment.
On Friday, Denise, John's daughter, and her family came to visit. They stayed until Sunday morning. We had a great visit. John was weak and was easily tired but, he was so glad to have them here. The kids were great. They swam and their cousin, Chandler spent the night. On Saturday, Debbie, Gary and the Lubbock Dickey Chicks came to visit. John was tired but was really happy to have his daughter and 5 of his grandchildren here.
Fast forward to the next Thursday, which was last Thursday. We saw the Doctor. He was pleased with how John looked and with how is blood levels are. We then went to start the Chemo. The nurses could not get blood out of his port. For those that don't know, the port was surgically placed in his upper left chest in order to always have a line to deliver the chemo. This is done so they wouldn't have to stick him with a new IV every week. The nurse tried and tried to get blood to come and never could. The doctor wanted us to have an xray done. We had now been at Arrington for about 2.5 hours. We walked down several hallways to get to radiation. The lobby was full. We were told there that in order to have an xray, we would have to go to admissions. I explained that we had been in the building getting blood, seeing doctors and trying to get chemo for some time and I didn't understand why we had to be admitted. The girl told me that this is the way it is so, we went to admissions. I asked the admissions person if there is now a system wide computer, why in the world would we need to be admitted and show John's insurance card, list of medications, and all the other question that they asked since he has been a constant patient for so long. She didn't know but agreed with me that all of this is pretty inefficient and extremely stressful on patients and their caregivers. After some time waiting, a man that works in admission, spent about 2 minutes with John and sent us back to radiation. The girl at the window asked if John was on any medications. By this time, I was tired and was irritated that she wanted the 4 page list. That ANYONE wanted it AGAIN!! These must have been put in the system wide computer system, at least 10 times. I guess my body language told her that I didn't have the list with me and told me never mind. After 30 minutes, John was called back for his xray. The lobby was still pretty full. About an hour later, someone came from the back to tell me that it would be a while because it appeared that John had a clot in the port and they were waiting for the doctor to call back. Another 30 minutes went by and John came out. We went back up the halls to Arrington We were told it was too late to do the chemo even if they could open the port, since the procedure takes a minimum of 7 hours.
We saw Dr. Fig. again. He apparently had been on the phone to see if someone could surgically replace the port. It was late in the day and he could not find anyone that he wanted to do it.. He also is hesitant to expose John to a surgical procedure due to his compromised immune system. He had his nurse give us a weeks worth of injections, to be given once per day, in the stomach, to attempt to open the port chemically. If that doesn't work, John will have to have anesthesia in order to change the port out. We will find out about that this coming Thursday.
A little side story. Yesterday, a woman that bought one of Lil's puppies from us, 9.5 years ago, came by to visit with the now totally grown up, Gracie. She was living in Menlo Park, CA. when Gracie went to live with her, they then moved to the Denver area. She has just taken a new job to run a small software company in Austin. She wanted to stop by since she was driving through Lubbock. Gracie is a litter mate to Lucky. They came about 8:30 AM. Allison came, too. Allison was at our house when Gracie left to go home with the women that bought her. We took pictures, and had a very nice, if short visit. Allison stayed and helped me for 7 hours getting through some paper work and helping me to get our bills paid. Thank you so much, Allison. Paper work is my hardest task. You made if very tolerable and you helped me solve some problems that needed solving.
This past week has been not bad for John. He is feeling a lot better since he is not on the chemo but, he still gets very tired very fast. We have wonderful next door neighbors that have 2 sons that mow our yards for us. They came today. I bathed and dried and groomed the dogs which took several hours. Nash has a lot of real estate covering his body! John kept up with what was going on by checking on my project and helped the boys some, with theirs. By the time we finished, around 7:30 or so, John was very tired. I gave him his evening meds and tube fed him. He went to bed. We still have several days before we go back on Thursday. I am glad to see John feeling better but, it is very hard on him to not be able to work around the house. What he loves to do more than anything is to work. He loves yard work. It is very frustrating for him. I understand that but, it worries me for him to push himself because of the clot.
Today, John and I had an appointment with an insurance person. We accomplished getting him off of Cobra and getting him registered with a Medicare supplement policy. That cut back on a big expense. I now have to find insurance for me since Cobra is so expensive. After the appointment, we went to have Mexican Food at Garcia's which is our favorite Tex-Mex restaurant. After our late lunch, John wanted to go to Barnes and Noble. We had some gift certificates left over from Christmas. We spent a couple of hours there. It was the most normal day we have had in months. It makes a big difference when some time passes without the poisons being put in his body. We bought a few books, came home and both of us collapsed. I sometimes wonder why I get as tired as he does. Seems like I should have a lot more energy than he does but, some days, I don't.
I appreciate all of you very much. There are quite a lot of you that have been inquiring since it has been a while since I have written. It seems the days fly by. I am doing a lot of the things that John used to do and I let the time get away with me. I will try to do better and keep you informed more often. It is really great knowing that we have such great friends that care so much. Keep those phone calls, emails, cards and thoughts coming in. It is remarkable how much they help.
On the 4th of July, in the afternoon, John's fever got higher. I called the doctor, it was the weekend and Dr. Shalaby was on call. (The doctor that had gone to Egypt.) He was pretty insistent that I take John in to the ER. My friends Johnanne and her sister, Jan had been at the house for a while helping me with some things. Alice was also there. We gathered a few things up, Jan went home and Johnanne followed us the the ER. I called to tell Allison that we were on our way. Allison was out of town on a fishing trip. She told me when we got there, for me to go in first, tell the front desk that I had a cancer patient with me that was running fever and had been on very aggressive chemo. She said that would get us in very fast. It worked like lightening! An attendant followed me to the car with a wheel chair. Johnanne walked up about that time and offered to park my car so I could go on in with John. We were taken straight in, to Pod (was it 6 or 9?). It was all the way to the very last part of the ER and they put us in the back corner. I don't think we could have been more isolated. This was a really good thing since chemo patients have compromised immune systems and exposure to bacteria and viruses could be very dangerous. There are lots of those floating around an Emergency room. We knew the ER doctor and he was quick to get to John and start running tests that Dr. Shalaby ordered. It was not dark when we left to go, so I would think it was somewhere around 8PM. Alice knows the dogs and the house in some ways better than I , she offered to spend the night with the dogs. Thank goodness she did. According to her, the fireworks were much worse that night than the night before. The dogs were traumatized. We communicated on the phone and I was successful in guiding her to tranquilize them enough that a loud TV would drowned out the firework noises that scare them so much.
After several tests, I asked if we would be staying the night. The ER doc said, "I don't think that John will be going anywhere tonight other than to a room. A couple of doctors that are friends with John heard that he was in the ER. They were called in for other patients and stopped by to check on John. This was another experience that told us that we are in the right place and it was good not to stay at Mayo in Scottsdale. Sometime around 2:30 AM, we were taken to our room. Johnanne and I drove and an ambulance had to transfer John to the Lakeside campus. That is the hospital that has the oncology floor. The Covenant system is quite large, here. The room was small but the nurses were incredible. Johnanne stayed the entire time and went to the room with us to help get John settled. The room was unbelievably hot. If I adjusted the temperature to 70 degrees, it turned off. If I set it at 60 degrees, hot air blew out. The IV machine that was hooked up to John was very loud and kept going off about every 10 minutes. Or more often if John moved his arm. The way the room was set up, the beep was next to the head of the couch/bed on which I was trying to sleep. Johnanne had left around 3:30 AM. The loud beeping had both John and me buzzing. We were so tired, it was early morning and there was no sleeping with that obnoxious sound.
I went to the nurses station around 4:30 and told them how hot the room was and how loud the machine was. An older nurse walked by and overheard what I was saying. She said that the whole hospital was impossibly hot. I was really glad to have a backup on this. A couple of minutes later, the same nurse brought in a floor fan and helped me set it up. I was so grateful because I was wet with sweat. I don't know when we got to sleep or really, if we ever did. I barely remember but, Dr. Shalaby stopped by and told us we could go home. Dr. Phillips stopped by to visit John since he was in the hospital seeing patients. I think word passes around that hospital faster than anyplace on earth. Sometime around noon, we were released to go to the house.
On Monday, Dr. Figurrero's office called to check on us since they had heard that we were in the hospital over the weekend. I told the nurse about what meds Dr. Shalaby had prescribed and Dr. Fig. immediately changed them and put him on something else. John continued to have a pretty rough week. On Thursday, we went to Arrington to have the constant pump removed for the week. This was the beginning of his week off of any treatment.
On Friday, Denise, John's daughter, and her family came to visit. They stayed until Sunday morning. We had a great visit. John was weak and was easily tired but, he was so glad to have them here. The kids were great. They swam and their cousin, Chandler spent the night. On Saturday, Debbie, Gary and the Lubbock Dickey Chicks came to visit. John was tired but was really happy to have his daughter and 5 of his grandchildren here.
Fast forward to the next Thursday, which was last Thursday. We saw the Doctor. He was pleased with how John looked and with how is blood levels are. We then went to start the Chemo. The nurses could not get blood out of his port. For those that don't know, the port was surgically placed in his upper left chest in order to always have a line to deliver the chemo. This is done so they wouldn't have to stick him with a new IV every week. The nurse tried and tried to get blood to come and never could. The doctor wanted us to have an xray done. We had now been at Arrington for about 2.5 hours. We walked down several hallways to get to radiation. The lobby was full. We were told there that in order to have an xray, we would have to go to admissions. I explained that we had been in the building getting blood, seeing doctors and trying to get chemo for some time and I didn't understand why we had to be admitted. The girl told me that this is the way it is so, we went to admissions. I asked the admissions person if there is now a system wide computer, why in the world would we need to be admitted and show John's insurance card, list of medications, and all the other question that they asked since he has been a constant patient for so long. She didn't know but agreed with me that all of this is pretty inefficient and extremely stressful on patients and their caregivers. After some time waiting, a man that works in admission, spent about 2 minutes with John and sent us back to radiation. The girl at the window asked if John was on any medications. By this time, I was tired and was irritated that she wanted the 4 page list. That ANYONE wanted it AGAIN!! These must have been put in the system wide computer system, at least 10 times. I guess my body language told her that I didn't have the list with me and told me never mind. After 30 minutes, John was called back for his xray. The lobby was still pretty full. About an hour later, someone came from the back to tell me that it would be a while because it appeared that John had a clot in the port and they were waiting for the doctor to call back. Another 30 minutes went by and John came out. We went back up the halls to Arrington We were told it was too late to do the chemo even if they could open the port, since the procedure takes a minimum of 7 hours.
We saw Dr. Fig. again. He apparently had been on the phone to see if someone could surgically replace the port. It was late in the day and he could not find anyone that he wanted to do it.. He also is hesitant to expose John to a surgical procedure due to his compromised immune system. He had his nurse give us a weeks worth of injections, to be given once per day, in the stomach, to attempt to open the port chemically. If that doesn't work, John will have to have anesthesia in order to change the port out. We will find out about that this coming Thursday.
A little side story. Yesterday, a woman that bought one of Lil's puppies from us, 9.5 years ago, came by to visit with the now totally grown up, Gracie. She was living in Menlo Park, CA. when Gracie went to live with her, they then moved to the Denver area. She has just taken a new job to run a small software company in Austin. She wanted to stop by since she was driving through Lubbock. Gracie is a litter mate to Lucky. They came about 8:30 AM. Allison came, too. Allison was at our house when Gracie left to go home with the women that bought her. We took pictures, and had a very nice, if short visit. Allison stayed and helped me for 7 hours getting through some paper work and helping me to get our bills paid. Thank you so much, Allison. Paper work is my hardest task. You made if very tolerable and you helped me solve some problems that needed solving.
This past week has been not bad for John. He is feeling a lot better since he is not on the chemo but, he still gets very tired very fast. We have wonderful next door neighbors that have 2 sons that mow our yards for us. They came today. I bathed and dried and groomed the dogs which took several hours. Nash has a lot of real estate covering his body! John kept up with what was going on by checking on my project and helped the boys some, with theirs. By the time we finished, around 7:30 or so, John was very tired. I gave him his evening meds and tube fed him. He went to bed. We still have several days before we go back on Thursday. I am glad to see John feeling better but, it is very hard on him to not be able to work around the house. What he loves to do more than anything is to work. He loves yard work. It is very frustrating for him. I understand that but, it worries me for him to push himself because of the clot.
Today, John and I had an appointment with an insurance person. We accomplished getting him off of Cobra and getting him registered with a Medicare supplement policy. That cut back on a big expense. I now have to find insurance for me since Cobra is so expensive. After the appointment, we went to have Mexican Food at Garcia's which is our favorite Tex-Mex restaurant. After our late lunch, John wanted to go to Barnes and Noble. We had some gift certificates left over from Christmas. We spent a couple of hours there. It was the most normal day we have had in months. It makes a big difference when some time passes without the poisons being put in his body. We bought a few books, came home and both of us collapsed. I sometimes wonder why I get as tired as he does. Seems like I should have a lot more energy than he does but, some days, I don't.
I appreciate all of you very much. There are quite a lot of you that have been inquiring since it has been a while since I have written. It seems the days fly by. I am doing a lot of the things that John used to do and I let the time get away with me. I will try to do better and keep you informed more often. It is really great knowing that we have such great friends that care so much. Keep those phone calls, emails, cards and thoughts coming in. It is remarkable how much they help.
Wednesday, July 16, 2008
Back on track
We go in the morning to start the treatments again. I expect to be there about 7 hours if it is like week one, last time.
Monday, July 14, 2008
Denise's visit
Denise and her family visited this weekend. We had a really good time. Both of us were tired when they left. John has only had a little nausea. Other than being very fatigued, he is doing pretty well on his week off. We go back on Thursday for another 7 hours of Chemo at Arrington and they will hook up the portable infusion pump again.
Our peach tree is full of peaches, I have no idea why they are so late, in our back yard. Everyone else's came in weeks ago. I have given away a couple of bushels and have a couple of bushels sitting on my kitchen counter. I plan to slice them and put them in the dehydrator. I hope I get all of that done. They are really delicious this year. I still have apricots coming and a few Thompson Seedless grapes. This is the fifth year for the trees and the vines. I knew it would talk 5 years for the grapes, I didn't know that the trees would take this long to give such a good harvest.
Our peach tree is full of peaches, I have no idea why they are so late, in our back yard. Everyone else's came in weeks ago. I have given away a couple of bushels and have a couple of bushels sitting on my kitchen counter. I plan to slice them and put them in the dehydrator. I hope I get all of that done. They are really delicious this year. I still have apricots coming and a few Thompson Seedless grapes. This is the fifth year for the trees and the vines. I knew it would talk 5 years for the grapes, I didn't know that the trees would take this long to give such a good harvest.
Friday, July 4, 2008
Long day at Arrington
As I begin to write this, it sounds like a war zone outside our door. We are out of the city limits and one of our neighbors has been firing VERY LOUD rockets for a few hours. The dogs are a nervous wreck even though I have given them Benadryl. I can't wait until tomorrow.
We went to Arrington again today for John's weekly chemo treatment. The place was very crowded and checking in took much longer than usual. Apparently, Covenant has decided to start using a new computer system. It is being used company wide. There is one problem at Arrington. (Are you paying attention, Jackie?) The computer system is set up for the hospital and not for out patient care. I had seen the problems everyone was having on Monday, when we changed out John's infusion pump and port. But, we went straight back to see a particular person and did not have to check in. Today, it took over an hour to get the lab work done. Then it took until 3PM for us to get back to the treatment room to start the chemo. The staff were incredibly busy and frustrated trying to figure out how to document everything as required and to take care of the patients.
While waiting in the lobby, John got very cold. I found a couple of blankets to cover him with but, he was still very cold. One of the nurses came to tell us that John's values were very low and he may not be able to tolerate the treatment today. He was also running a fever. She went to talk to the doctor. His suggestion was, since this is the last in this series, he needed to go ahead.
I found a sandwich for John since we had no chance to eat between our appointments. Shortly after the treatment started, John started to shake. He was shaking and shivering all over. I brought him two more blankets. They didn't help. When I told the nurses about it, they brought microwave heated towels and heated blankets. The shivering never stopped.
John has been having a lot of pain in his head, shoulders and neck. Today it got much worse. The doctor ordered Darvocet but, it didn't arrive from the pharmacy until we were ready to leave around 5:20. One the way home, we stopped for more meds that were prescribed and finally arrived at home. John was in a lot of pain and very uncomfortable. I gave him his evening meds and he went to bed. He has been resting all evening. He is very confused and doesn't remember much. They are just slamming him with this poison. He will be using the infusion pump for one more week and then he gets a week off. I am hoping that he will have a decent break and start to feel better before he starts all over again.
Most of our support group is out of town this weekend. Honestly, I am a little nervous about that but, I can't expect people to be here all of the time. I appreciate all of you that are keeping us in your thoughts and prayers. This is a very difficult experience.
We went to Arrington again today for John's weekly chemo treatment. The place was very crowded and checking in took much longer than usual. Apparently, Covenant has decided to start using a new computer system. It is being used company wide. There is one problem at Arrington. (Are you paying attention, Jackie?) The computer system is set up for the hospital and not for out patient care. I had seen the problems everyone was having on Monday, when we changed out John's infusion pump and port. But, we went straight back to see a particular person and did not have to check in. Today, it took over an hour to get the lab work done. Then it took until 3PM for us to get back to the treatment room to start the chemo. The staff were incredibly busy and frustrated trying to figure out how to document everything as required and to take care of the patients.
While waiting in the lobby, John got very cold. I found a couple of blankets to cover him with but, he was still very cold. One of the nurses came to tell us that John's values were very low and he may not be able to tolerate the treatment today. He was also running a fever. She went to talk to the doctor. His suggestion was, since this is the last in this series, he needed to go ahead.
I found a sandwich for John since we had no chance to eat between our appointments. Shortly after the treatment started, John started to shake. He was shaking and shivering all over. I brought him two more blankets. They didn't help. When I told the nurses about it, they brought microwave heated towels and heated blankets. The shivering never stopped.
John has been having a lot of pain in his head, shoulders and neck. Today it got much worse. The doctor ordered Darvocet but, it didn't arrive from the pharmacy until we were ready to leave around 5:20. One the way home, we stopped for more meds that were prescribed and finally arrived at home. John was in a lot of pain and very uncomfortable. I gave him his evening meds and he went to bed. He has been resting all evening. He is very confused and doesn't remember much. They are just slamming him with this poison. He will be using the infusion pump for one more week and then he gets a week off. I am hoping that he will have a decent break and start to feel better before he starts all over again.
Most of our support group is out of town this weekend. Honestly, I am a little nervous about that but, I can't expect people to be here all of the time. I appreciate all of you that are keeping us in your thoughts and prayers. This is a very difficult experience.
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