Bon appetite
Gilly’s weight is sliding downhill rapidly. He has no energy and shows no initiative to care for himself, occupy his time with anything other than lying on the couch in a dark room, or connect with people.
The CNR team took affirmative action yesterday; they suggested that Gilly be put on an anti-depressant. Dr. MacDonald asked to be paged during our conference with Dr. Kavan today so as to consult with him about medications and share his concerns about Gilly’s weight loss and apparent depression (which Gilly continues to flatly deny).
The question of swelling (adima / adema…spell check doesn’t like either version) on the brain was raised, and Dr. MacDonald wanted to go and check the MRI results. This was impossible, because it was done at the Neuro. Dr. Kavan’s habit of sending us from the Jewish to the Neuro will have to stop, because it renders the information inaccessible to the doctors who require the results.
Dr. MacDonald feels there may be swelling in the appetite center (of course he used fancier terms, but I wasn’t quick enough to catch them in the appropriate context. He mentioned endocronolgy and hypothylamic, if I’m not mistaken). He has a friend who works in Seattle who specializes in this, and will call for his help if the MRI results indicate this.
What he suggests is: a trial of Celexa (anti-depressant), going back on Decadron (steroid to reduce swelling), a trial of Megesterol (adrenal hormone) and a call to his friend if the appetite center is involved. He would also like to look into taking Gilly off the Dilantin (anti-seizure) since he has never had one to our knowledge. It was questionable at some point very early on, before radiation, but this was never confirmed.
Thi measured Gilly’s strength, but did not give us a report. He looked disturbed in a compassionate sort of way. He was more interested in Gilly’s weight loss, as were we all. Nelda sat with us and admitted that as a nutritionist, she has nothing further to suggest. I have taken all her advice, but greater measures are in order. She spent time with us anyway and tried to give us both a pep talk. She promised to contact the social worker (on another matter; mentioned below) to see if anything else could be done to help. We are more than blessed by being seen by the CNR team. There are incomparable when it comes to expertise, compassion and divergent thinking.
Today, Dr. Kavan was unable to confirm the MRI results (which is pretty much what I thought our visit and today’s decisions were hinging on), because he was at the wrong hospital. “Where did you have it done?” he asked. “The MNI, where you sent us,” I answered as I sensed a rush of anxiety take over my body. I was not surprised, since this is a recurring theme in our dealings with Dr. Kavan, but this did not make it an easier pill to swallow. I was devastated, because although I was cognitively aware of the likelihood this would happen, I was emotionally unprepared to face another sleepless night, waiting to know how that tumour is doing after all the discomfort Gilly has experienced as a result of the ‘treatment.’
He assured us, however, that it is highly unlikely that the tumour has changed. He knows the ‘disease’ (as he bluntly terms it) well, and does not expect change. What he is most interested in is the resultant swelling. He had reviewed Dr. MacDonald’s notes before seeing us (we hardly waited for him at all today, actually) and was quite concerned with Gilly’s overall downhill state of health (weight loss and depression).
Here’s what he decided to do: Take Gilly off of Temodal for one month, put him on the anti-depressant and the steroid and see if this helps. He explained that there is a condition known as somnolence syndrome (again, I’m not sure of the exact spelling or if I’m using the term in exactly the correct context). It is a result of radiation, and some people do suffer from it. It involves swelling and would tend to cause excessive sleepiness.
He will look at the MRI results tomorrow. If he can confirm what he suspects; that there is no progression in terms of tumour growth, and if there is indeed evidence of swelling, he will take him off Dilantin as well. I will have t ask again to fully understand the connection, but the Dilantin may also be playing havoc with Gilly’s state of well being, so if he doesn’t appear to need it, he’s better off not taking it. If you’re an avid blog reader, you may remember that his senitoine level was measured two weeks ago and it was at 15, so he moved from 3 times a day to 4, and this may be adding to Gilly’s discomfort.
I have to call Dr. Kavan tomorrow afternoon to find out the results. Now that I’m looking at my notes, I realize I will need to contact Dr. MacDonald as well to see if Gilly should begin the hormone Magesterol (or Majesterol???).
So back to social worker issues. As I mentioned last week, getting Gilly to eat lunch and take his medication in a timely fashion was not working. This week, we were scheduled to meet the home care worker (I try not to use real names when I have something negative to say, except for big shot doctors); we’ll call her Jennifer. I arranged for my mom to be here at 11:20 to show her around the kitchen and introduce her to Gilly. I felt the need for a familiar person to be here to assess the situation and connect the care giver to receiver in a humane way. Guess what? She didn’t show up. She forgot!!!! I found this out on my way home to pick Gilly u for the CNR appointment, which was why Nelda thought it might be a good idea to call the social worker at the Jewish to see what she could do. She met us today while we were with Dr. Kavan, but she had no viable suggestions to offer in terms of how to get the system working for us. She was not at all positive about the feasibility of the CSSS getting a reliable system in place and so offered me a number I could call to hire someone. I am a member of a community of people who have many such numbers to offer me. If I need to hire someone, I will do so. For now, I am trying to tap the available community resources.
Jennifer did leave a message on my cell phone explaining that she simply forgot to show, and then called me last evening to apologize profusely yet again. She sounds like a lovely person, and brad did highly recommend her, so I agreed to give her one more chance. She will come on Monday and Yaron will show her the ropes. We’ll play it by ear. I assured her that I understand human error, but the whole point of having someone come over here at noon is to remind Gilly to take his meds and to eat. The whole incident rubs me the wrong way, much like listening to someone singing my favourite song out of tune. She did not make excuses, yet mentioned that she was out of sync due to the holiday on Monday. I know what she means. I dragged my class into the wrong room on Tuesday morning because I forgot what day it was. They looked at me quizzically, but followed like sheep. When I realized my error they laughed in a good natured way (thankfully I teach an amazing group of students this semester, because that won’t be my last mistake, I’m sure, and it wasn’t even my first. It’s only week 2).
Brad called this afternoon to assure me that he will be on top of her on Monday, and that it is very unusual for her to mess up this way. He considers her very reliable, which was why he chose her for the job. He appealed to me to give her another chance, and I hesitantly agreed to do so. I told him how scared I am to have something like this happen again, especially when no one else is around to pick up the pieces the way my mom did. He understood and we left it at that.
I managed to squeeze in an afternoon of fieldwork supervision, and lost the fight against traffic on my way home. We’re off to grab some Chinese food before dropping Yaron off for hockey (yes, so the season begins). Tamara and Max will join us. Bon Appetite, Gilly! I look forward to some dinnertime conversation without having to pull teeth.
The CNR team took affirmative action yesterday; they suggested that Gilly be put on an anti-depressant. Dr. MacDonald asked to be paged during our conference with Dr. Kavan today so as to consult with him about medications and share his concerns about Gilly’s weight loss and apparent depression (which Gilly continues to flatly deny).
The question of swelling (adima / adema…spell check doesn’t like either version) on the brain was raised, and Dr. MacDonald wanted to go and check the MRI results. This was impossible, because it was done at the Neuro. Dr. Kavan’s habit of sending us from the Jewish to the Neuro will have to stop, because it renders the information inaccessible to the doctors who require the results.
Dr. MacDonald feels there may be swelling in the appetite center (of course he used fancier terms, but I wasn’t quick enough to catch them in the appropriate context. He mentioned endocronolgy and hypothylamic, if I’m not mistaken). He has a friend who works in Seattle who specializes in this, and will call for his help if the MRI results indicate this.
What he suggests is: a trial of Celexa (anti-depressant), going back on Decadron (steroid to reduce swelling), a trial of Megesterol (adrenal hormone) and a call to his friend if the appetite center is involved. He would also like to look into taking Gilly off the Dilantin (anti-seizure) since he has never had one to our knowledge. It was questionable at some point very early on, before radiation, but this was never confirmed.
Thi measured Gilly’s strength, but did not give us a report. He looked disturbed in a compassionate sort of way. He was more interested in Gilly’s weight loss, as were we all. Nelda sat with us and admitted that as a nutritionist, she has nothing further to suggest. I have taken all her advice, but greater measures are in order. She spent time with us anyway and tried to give us both a pep talk. She promised to contact the social worker (on another matter; mentioned below) to see if anything else could be done to help. We are more than blessed by being seen by the CNR team. There are incomparable when it comes to expertise, compassion and divergent thinking.
Today, Dr. Kavan was unable to confirm the MRI results (which is pretty much what I thought our visit and today’s decisions were hinging on), because he was at the wrong hospital. “Where did you have it done?” he asked. “The MNI, where you sent us,” I answered as I sensed a rush of anxiety take over my body. I was not surprised, since this is a recurring theme in our dealings with Dr. Kavan, but this did not make it an easier pill to swallow. I was devastated, because although I was cognitively aware of the likelihood this would happen, I was emotionally unprepared to face another sleepless night, waiting to know how that tumour is doing after all the discomfort Gilly has experienced as a result of the ‘treatment.’
He assured us, however, that it is highly unlikely that the tumour has changed. He knows the ‘disease’ (as he bluntly terms it) well, and does not expect change. What he is most interested in is the resultant swelling. He had reviewed Dr. MacDonald’s notes before seeing us (we hardly waited for him at all today, actually) and was quite concerned with Gilly’s overall downhill state of health (weight loss and depression).
Here’s what he decided to do: Take Gilly off of Temodal for one month, put him on the anti-depressant and the steroid and see if this helps. He explained that there is a condition known as somnolence syndrome (again, I’m not sure of the exact spelling or if I’m using the term in exactly the correct context). It is a result of radiation, and some people do suffer from it. It involves swelling and would tend to cause excessive sleepiness.
He will look at the MRI results tomorrow. If he can confirm what he suspects; that there is no progression in terms of tumour growth, and if there is indeed evidence of swelling, he will take him off Dilantin as well. I will have t ask again to fully understand the connection, but the Dilantin may also be playing havoc with Gilly’s state of well being, so if he doesn’t appear to need it, he’s better off not taking it. If you’re an avid blog reader, you may remember that his senitoine level was measured two weeks ago and it was at 15, so he moved from 3 times a day to 4, and this may be adding to Gilly’s discomfort.
I have to call Dr. Kavan tomorrow afternoon to find out the results. Now that I’m looking at my notes, I realize I will need to contact Dr. MacDonald as well to see if Gilly should begin the hormone Magesterol (or Majesterol???).
So back to social worker issues. As I mentioned last week, getting Gilly to eat lunch and take his medication in a timely fashion was not working. This week, we were scheduled to meet the home care worker (I try not to use real names when I have something negative to say, except for big shot doctors); we’ll call her Jennifer. I arranged for my mom to be here at 11:20 to show her around the kitchen and introduce her to Gilly. I felt the need for a familiar person to be here to assess the situation and connect the care giver to receiver in a humane way. Guess what? She didn’t show up. She forgot!!!! I found this out on my way home to pick Gilly u for the CNR appointment, which was why Nelda thought it might be a good idea to call the social worker at the Jewish to see what she could do. She met us today while we were with Dr. Kavan, but she had no viable suggestions to offer in terms of how to get the system working for us. She was not at all positive about the feasibility of the CSSS getting a reliable system in place and so offered me a number I could call to hire someone. I am a member of a community of people who have many such numbers to offer me. If I need to hire someone, I will do so. For now, I am trying to tap the available community resources.
Jennifer did leave a message on my cell phone explaining that she simply forgot to show, and then called me last evening to apologize profusely yet again. She sounds like a lovely person, and brad did highly recommend her, so I agreed to give her one more chance. She will come on Monday and Yaron will show her the ropes. We’ll play it by ear. I assured her that I understand human error, but the whole point of having someone come over here at noon is to remind Gilly to take his meds and to eat. The whole incident rubs me the wrong way, much like listening to someone singing my favourite song out of tune. She did not make excuses, yet mentioned that she was out of sync due to the holiday on Monday. I know what she means. I dragged my class into the wrong room on Tuesday morning because I forgot what day it was. They looked at me quizzically, but followed like sheep. When I realized my error they laughed in a good natured way (thankfully I teach an amazing group of students this semester, because that won’t be my last mistake, I’m sure, and it wasn’t even my first. It’s only week 2).
Brad called this afternoon to assure me that he will be on top of her on Monday, and that it is very unusual for her to mess up this way. He considers her very reliable, which was why he chose her for the job. He appealed to me to give her another chance, and I hesitantly agreed to do so. I told him how scared I am to have something like this happen again, especially when no one else is around to pick up the pieces the way my mom did. He understood and we left it at that.
I managed to squeeze in an afternoon of fieldwork supervision, and lost the fight against traffic on my way home. We’re off to grab some Chinese food before dropping Yaron off for hockey (yes, so the season begins). Tamara and Max will join us. Bon Appetite, Gilly! I look forward to some dinnertime conversation without having to pull teeth.
posted by Gilly at 6:02 PM
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