Up to Stage 4….Brain Mets, Chest Mets, Ab Lymph Node Mets SO FAST!

UPDATE:

First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

Michelle

UPDATE:

First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

Michelle

UPDATE:

First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

Michelle