Increased Steroids
Well, we had a great weekend away. I slept until 1000 one morning and then went shopping. Sad thing is that by 1200 I was very lonely. Still it was good. I came back rested and relaxed. And it is a good thing. We have been very busy this week. Mom began falling again on Saturday while Anna was with mom. She had about 3 Âfalls that were almost harmful. When we say fall usually we mean she began to fall but we were able to break the fall or most likely put her down on the ground gently. But on occasion there is just not any thing that can be done. So far the most damage she has done is skin up her knee. She also called Anna ÂBecki all day on Friday. MomÂs cousin had come to sit with her that morning and her name is Becki. (Becki said they had a wonderful morning reminiscing about their childhood, etc.)
Anna kept her home Sunday until some friends came to get her. They went out to eat and to a movie. Apparently, they had some difficulty getting mom out of a restroom and had to crawl under to let her out! Then on Monday, mom went to work with me and fell 3 more times. One time was very scary. We have about 3 steps going into the office and she got up two and then began to have leg spasms. I got behind her and braced myself hanging on to the hand rail and wall. I had mom sit back on my knee. This kept her from falling. I then had her lean forward and twist around to sit on the next step. I then had to call the nurses to come help me get her up. We took her back out to the car in a wheelchair.
Next, on Monday afternoon, we had a consultation with a medical oncologist at UAMS to see what they had to offer mom. The good news is that they use both CPT11 and Avastain. They use CPT11 as a second line drug meaning when you have tumor regrowth on Temodar and radiation then you get put on CPT11. If you have tumor regrowth on this then you get Avastain. Then if you have regrowth you begin Thalidimide (the drug that caused so many birth defects in the 60Âs). They will not combine the CPT11 and Avastain together. You have to be on clinical trials for that. The Avastain can be very hard on the body. So, she uses it with great caution. She wanted to get an MRI to see why mom was declining clinically to make sure we could wait for our appt. in Maryland. She was encouraging when discussing clinical trials. She said there are also some new molecular drugs that look promising.
Well, I decided we could be in Maryland probably by the time the MRI was read here. So we ran around like crazy people begging for medical records to be expedited. Jana began looking up flights and travel distance and routes to the hospital from the airport. On Tuesday morning, I began calling the NIH at 700 in the morning. By 8:15 we had an appointment for Wednesday at 10:00. We then ran around again gathering the remaining medical records like the slides, films, etc. By 1:00 we were headed to the airport. I parked put mom in the wheelchair, hooked the small suitcase to the chair, placed my backpack on my back and told her to strap herself in. I ran from the car to the terminal! One man looked at us and said she makes that look so easy. I could respond for panting! We got checked in, had boarding passes and were holding our hands out for the security pass when they announced they had cancelled the flight due to snow!!!!!!!!!! I about cried. We had cancelled her 11:30 MRI to make the plane! We tried to figure out if we could take the later flight, but of course it was full and they were talking of closing the Baltimore airports. We talked about flying into a nearby city and driving in and quickly decided that driving in the blizzard might not be the best thing for mom. So, we accepted that door as closed and went home. We rescheduled the appt for next Wed. (They were not real encouraging about the weather either. TheSent. sent all itÂs employees home and they were not sure who would be able to make it in the next day anyway.) Mom also called me Marletta after the airport adventure. For the first time I could not redirect her. She did not belief that I was not Marletta. She kept asking about Buck and his job. Finally, I said I didnÂt know where Buck worked and in that demeaning tones only a mother can use said ÂOh it is one of those situations then huh? Like I was married to Buck and didnÂt know where he worked. We had to change subjects before she came back around and realized that I was Angie.
So, we saw Dr Baltz today. He increased momÂs steroids to 4 times a day for a total of 16mg! He said, ÂYou do realize we have gone from 2mg to 16mg in just 6 weeks. So he is very worried about her. He did not feel the MRI was necessary at this point. He said he thought it was important that we continue with the cruise Âcome hell or high waterÂ. So we are keepinAndhe Wed appt. and headed to New Orleans tonight. We are all very concerned about mom and worried, but I too think this cruise is very important. Sometimes quality outweighs quantity. We look forward to all being together and having nothing to do but spend time with each other and mom. We look forward to watching her enjoy her first cruise as well. We will deal with reality again on Tuesday.
Well, we had a great weekend away. I slept until 1000 one morning and then went shopping. Sad thing is that by 1200 I was very lonely. Still it was good. I came back rested and relaxed. And it is a good thing. We have been very busy this week. Mom began falling again on Saturday while Anna was with mom. She had about 3 Âfalls that were almost harmful. When we say fall usually we mean she began to fall but we were able to break the fall or most likely put her down on the ground gently. But on occasion there is just not any thing that can be done. So far the most damage she has done is skin up her knee. She also called Anna ÂBecki all day on Friday. MomÂs cousin had come to sit with her that morning and her name is Becki. (Becki said they had a wonderful morning reminiscing about their childhood, etc.)
Anna kept her home Sunday until some friends came to get her. They went out to eat and to a movie. Apparently, they had some difficulty getting mom out of a restroom and had to crawl under to let her out! Then on Monday, mom went to work with me and fell 3 more times. One time was very scary. We have about 3 steps going into the office and she got up two and then began to have leg spasms. I got behind her and braced myself hanging on to the hand rail and wall. I had mom sit back on my knee. This kept her from falling. I then had her lean forward and twist around to sit on the next step. I then had to call the nurses to come help me get her up. We took her back out to the car in a wheelchair.
Next, on Monday afternoon, we had a consultation with a medical oncologist at UAMS to see what they had to offer mom. The good news is that they use both CPT11 and Avastain. They use CPT11 as a second line drug meaning when you have tumor regrowth on Temodar and radiation then you get put on CPT11. If you have tumor regrowth on this then you get Avastain. Then if you have regrowth you begin Thalidimide (the drug that caused so many birth defects in the 60Âs). They will not combine the CPT11 and Avastain together. You have to be on clinical trials for that. The Avastain can be very hard on the body. So, she uses it with great caution. She wanted to get an MRI to see why mom was declining clinically to make sure we could wait for our appt. in Maryland. She was encouraging when discussing clinical trials. She said there are also some new molecular drugs that look promising.
Well, I decided we could be in Maryland probably by the time the MRI was read here. So we ran around like crazy people begging for medical records to be expedited. Jana began looking up flights and travel distance and routes to the hospital from the airport. On Tuesday morning, I began calling the NIH at 700 in the morning. By 8:15 we had an appointment for Wednesday at 10:00. We then ran around again gathering the remaining medical records like the slides, films, etc. By 1:00 we were headed to the airport. I parked put mom in the wheelchair, hooked the small suitcase to the chair, placed my backpack on my back and told her to strap herself in. I ran from the car to the terminal! One man looked at us and said she makes that look so easy. I could respond for panting! We got checked in, had boarding passes and were holding our hands out for the security pass when they announced they had cancelled the flight due to snow!!!!!!!!!! I about cried. We had cancelled her 11:30 MRI to make the plane! We tried to figure out if we could take the later flight, but of course it was full and they were talking of closing the Baltimore airports. We talked about flying into a nearby city and driving in and quickly decided that driving in the blizzard might not be the best thing for mom. So, we accepted that door as closed and went home. We rescheduled the appt for next Wed. (They were not real encouraging about the weather either. TheSent. sent all itÂs employees home and they were not sure who would be able to make it in the next day anyway.) Mom also called me Marletta after the airport adventure. For the first time I could not redirect her. She did not belief that I was not Marletta. She kept asking about Buck and his job. Finally, I said I didnÂt know where Buck worked and in that demeaning tones only a mother can use said ÂOh it is one of those situations then huh? Like I was married to Buck and didnÂt know where he worked. We had to change subjects before she came back around and realized that I was Angie.
So, we saw Dr Baltz today. He increased momÂs steroids to 4 times a day for a total of 16mg! He said, ÂYou do realize we have gone from 2mg to 16mg in just 6 weeks. So he is very worried about her. He did not feel the MRI was necessary at this point. He said he thought it was important that we continue with the cruise Âcome hell or high waterÂ. So we are keepinAndhe Wed appt. and headed to New Orleans tonight. We are all very concerned about mom and worried, but I too think this cruise is very important. Sometimes quality outweighs quantity. We look forward to all being together and having nothing to do but spend time with each other and mom. We look forward to watching her enjoy her first cruise as well. We will deal with reality again on Tuesday.
posted by Angie at 12:48 AM
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