No news was good news
I must try to remember to be more positive; Dr. Kavan came through for us this morning. I called the number given to me by Denise, and he took the phone immediately. He started off by laughing about the lady’s knee on the scan. I held my breath in anticipation, but laughed along with him to be nice. He holds our future in his hands, after all.
He reported on the findings: There doesn’t seem to be a major change. The most recent MRI is slightly different, but this is common after radiation / chemotherapy apparently. The treatment itself may cause structural changes. He noted that changes were already apparent in April (which Dr. Sultanen had refuted way back when). I acknowledged that I was aware there was some discrepancy at that time as to how to read the ‘difference' noted. He said, “I am not concerned that much.” I only wish that he had left out the last two words, because everything else all day long was positive. He went on to say that he sees no need to change anything regarding treatment; the disease seems to be still under control, and is not the aggressive type. He advised that Gilly go back on chemo in a few days time.
He was rather chatty, and happy to answer all of my questions (regarding other medications he’s on, etc.) so I probed further. I asked how and where Gilly will continue to be followed. I shared my frustration at having to run all over town to gather MRI CD’s, and mentioned that I as caregiver need to be sane, and this sort of nonsense drives me around the bend. I was honest in stating that dragging Gilly downtown for an unnecessary appointment last week was not appreciated, and I want to avoid this sort of occurrence in future. “Please tell me exactly what the story is so that I know where we stand,” I appealed to him. He admitted that this should not have to happen again. He wants to see Gilly on a monthly basis at the Jewish to monitor his status in relation to chemotherapy. Every four months he’d like him to have an MRI at the Neuro, and then have a follow-up visit there (instead of at the Jewish), so as to tap into the expertise of the neurological staff at the Neuro. I said it sounds O.K. with me if he sticks to that system.
I admitted that it was very simple to obtain a copy of Gilly’s MRI from the Neuro, whereas it was expensive and complicated to do so at the Jewish, which was one of the annoying factors that caused unwarranted stress on my part. He agreed, and laced into the system at the Jewish when it comes to MRI’s.
We left it as such; Gilly will go back onto Temodal over the next few days (I’ll wait until after Yom Kippur, I guess). We will see Dr. Kavan next on October 12th at the Jewish.
I went off to begin my workday at 9:20 after spending time in my office (cell phone in my car) to make the call. My mom picked Gilly up after physio (I had dropped him off beforehand) and took him home. Jennifer came by to remind him to eat lunch and take medication. They walked around the block just before after lunch. She guided him through his ball exercises too (I assume; I left pictorial diagrams with written explanations, which Gilly of course is unable to read). He says he requested that she do these two extra things with him as a result of a slightly heated discussion this morning.
Just before leaving the house this morning, he refused to allow me to bring the ball upstairs, and told me to leave him alone on this matter. I try to have everything available and accessible for Jennifer so she has all the tools she needs to follow through on prompting him to eat and now to institute the exercise program as part of their regime. I put the cards on the table for him by warning him that he needs to exercise or he will become totally helpless. Apparently, while on Decadron, he must work on his quads, so this is crucial too. He took my advice to heart, it seems, and not only permitted me to bring the ball upstairs, but claims that he asked her to take a walk. I will have to contact her to give her some further information. She may not realize that he needs to be coerced into doing the exercises, and that she should not take no for an answer. This will save me the unpleasant task of debating this with Gilly every day.
In the car early this morning on the way to physio, I asked him, “What role exactly would you like me to play in your life? I want to do what’s best, but I must respect your wishes at the same time. If you really want me to leave you alone, well, I guess I may have to do so, but I worry about your health.” He answered immediately, “I want you to do just what you are doing.” “Bugging you and pushing you to do things you do not wish to do?” I countered. “Yes, you have to keep doing this.” Well that settled matters. I feel he gave me license to nag him. I’m glad that Jennifer has taken over some of these tasks so that I have less to nag about.
I met Gilly back at the Jewish at 2:55. My mother dropped him off for me so that I could work until then, which made a huge difference in my week. I now get tomorrow off to work from home.
We entered the radio oncology department and I asked Gilly to take out his hospital card. “I forgot it,” he admitted. I decided to let him take responsibility, so I asked him to be the one to go and tell the secretary (they always ask for the hospital card; I wasn’t home to remind him to take his wallet). Dr. Sultanen motioned to us from a distance to come in quickly, because he needs to leave early. We happily sauntered past the secretary's desk into the examining room.
The size of the tumour, he explained seems to be either the same, or a little bit ‘less enhancing’ (a GOOD term). Today’s news just keeps getting better. The MRI shows no swelling. The fatigue that Gilly was feeling (which sent him off on a Temodal holiday) is caused by a syndrome, as Dr. Kavan mentioned to us on the 7th. I believe it is spelled 'somnalence.' It is due to radiation. Not everyone experiences it, but it usually appears about 8 weeks after radiation (which makes total sense) and can last for a couple of months, more or less, depending on the person.
This was a tremendous relief to hear. I shared that I had spoken earlier to Dr. Kavan and provided him with the information I was given this morning. He suggested that we see him again whenever we have an MRI. He doesn’t mind if it’s from the Neuro, but I’d have to bring it to him again, because reports are not detailed enough. He said that if you ask nicely, the radiologist at the Jewish will agree to read the MRI from the Neuro, but will provide only a verbal report. I said that we don’t need it in writing because we will have this option at the Neuro, but another opinion is always welcome (especially when terms like ‘less enhancing’ are used).
Dr. Sultanen at some point during the conversation suggested we stick to one hospital. I reminded him that we chose the Jewish in June and had the files moved, but Dr. Kavan insists that it is too long a wait at the Jewish for MRI’s. He did not use the word ‘hogwash’ but his face spelled it out; he intimated that this is an exaggeration, and if we ever want an MRI done at the Jewish, he would be most happy to arrange it. I mentioned to him that in my profession, working on a team seems to hold a very different meaning. He smiled, and we discussed the fact that Dr. Kavan works at two hospitals and so is not a consistent member of the ‘team’ at the Jewish.
Dr. Sultanen left it very open to us as to how often and for what reason we should see him. He offered to review the MRI’s from the Neuro every time we have one done, and to see us after having a chance to compare results. He said we are free to call him if we have any questions or concerns and he would be happy to meet with us at our bidding.
We left the hospital as if walking on air. When we arrived at my car I mentioned that I found a legal spot without a meter. I admitted that I saw this as a sign of good things to come today, and my superstitious thoughts were validated. While driving, I looked over and caught Gilly laughing. I asked, “What’s so funny?” thinking he was laughing at my driving skills (which would not be surprising). “Nothing’s funny. I’m just happy about my results.” Gilly has probably been more aware of the gravity of my worries than I had thought.
A huge weight seems to have been lifted from our shoulders. I know I’ll sleep soundly tonight.
He reported on the findings: There doesn’t seem to be a major change. The most recent MRI is slightly different, but this is common after radiation / chemotherapy apparently. The treatment itself may cause structural changes. He noted that changes were already apparent in April (which Dr. Sultanen had refuted way back when). I acknowledged that I was aware there was some discrepancy at that time as to how to read the ‘difference' noted. He said, “I am not concerned that much.” I only wish that he had left out the last two words, because everything else all day long was positive. He went on to say that he sees no need to change anything regarding treatment; the disease seems to be still under control, and is not the aggressive type. He advised that Gilly go back on chemo in a few days time.
He was rather chatty, and happy to answer all of my questions (regarding other medications he’s on, etc.) so I probed further. I asked how and where Gilly will continue to be followed. I shared my frustration at having to run all over town to gather MRI CD’s, and mentioned that I as caregiver need to be sane, and this sort of nonsense drives me around the bend. I was honest in stating that dragging Gilly downtown for an unnecessary appointment last week was not appreciated, and I want to avoid this sort of occurrence in future. “Please tell me exactly what the story is so that I know where we stand,” I appealed to him. He admitted that this should not have to happen again. He wants to see Gilly on a monthly basis at the Jewish to monitor his status in relation to chemotherapy. Every four months he’d like him to have an MRI at the Neuro, and then have a follow-up visit there (instead of at the Jewish), so as to tap into the expertise of the neurological staff at the Neuro. I said it sounds O.K. with me if he sticks to that system.
I admitted that it was very simple to obtain a copy of Gilly’s MRI from the Neuro, whereas it was expensive and complicated to do so at the Jewish, which was one of the annoying factors that caused unwarranted stress on my part. He agreed, and laced into the system at the Jewish when it comes to MRI’s.
We left it as such; Gilly will go back onto Temodal over the next few days (I’ll wait until after Yom Kippur, I guess). We will see Dr. Kavan next on October 12th at the Jewish.
I went off to begin my workday at 9:20 after spending time in my office (cell phone in my car) to make the call. My mom picked Gilly up after physio (I had dropped him off beforehand) and took him home. Jennifer came by to remind him to eat lunch and take medication. They walked around the block just before after lunch. She guided him through his ball exercises too (I assume; I left pictorial diagrams with written explanations, which Gilly of course is unable to read). He says he requested that she do these two extra things with him as a result of a slightly heated discussion this morning.
Just before leaving the house this morning, he refused to allow me to bring the ball upstairs, and told me to leave him alone on this matter. I try to have everything available and accessible for Jennifer so she has all the tools she needs to follow through on prompting him to eat and now to institute the exercise program as part of their regime. I put the cards on the table for him by warning him that he needs to exercise or he will become totally helpless. Apparently, while on Decadron, he must work on his quads, so this is crucial too. He took my advice to heart, it seems, and not only permitted me to bring the ball upstairs, but claims that he asked her to take a walk. I will have to contact her to give her some further information. She may not realize that he needs to be coerced into doing the exercises, and that she should not take no for an answer. This will save me the unpleasant task of debating this with Gilly every day.
In the car early this morning on the way to physio, I asked him, “What role exactly would you like me to play in your life? I want to do what’s best, but I must respect your wishes at the same time. If you really want me to leave you alone, well, I guess I may have to do so, but I worry about your health.” He answered immediately, “I want you to do just what you are doing.” “Bugging you and pushing you to do things you do not wish to do?” I countered. “Yes, you have to keep doing this.” Well that settled matters. I feel he gave me license to nag him. I’m glad that Jennifer has taken over some of these tasks so that I have less to nag about.
I met Gilly back at the Jewish at 2:55. My mother dropped him off for me so that I could work until then, which made a huge difference in my week. I now get tomorrow off to work from home.
We entered the radio oncology department and I asked Gilly to take out his hospital card. “I forgot it,” he admitted. I decided to let him take responsibility, so I asked him to be the one to go and tell the secretary (they always ask for the hospital card; I wasn’t home to remind him to take his wallet). Dr. Sultanen motioned to us from a distance to come in quickly, because he needs to leave early. We happily sauntered past the secretary's desk into the examining room.
The size of the tumour, he explained seems to be either the same, or a little bit ‘less enhancing’ (a GOOD term). Today’s news just keeps getting better. The MRI shows no swelling. The fatigue that Gilly was feeling (which sent him off on a Temodal holiday) is caused by a syndrome, as Dr. Kavan mentioned to us on the 7th. I believe it is spelled 'somnalence.' It is due to radiation. Not everyone experiences it, but it usually appears about 8 weeks after radiation (which makes total sense) and can last for a couple of months, more or less, depending on the person.
This was a tremendous relief to hear. I shared that I had spoken earlier to Dr. Kavan and provided him with the information I was given this morning. He suggested that we see him again whenever we have an MRI. He doesn’t mind if it’s from the Neuro, but I’d have to bring it to him again, because reports are not detailed enough. He said that if you ask nicely, the radiologist at the Jewish will agree to read the MRI from the Neuro, but will provide only a verbal report. I said that we don’t need it in writing because we will have this option at the Neuro, but another opinion is always welcome (especially when terms like ‘less enhancing’ are used).
Dr. Sultanen at some point during the conversation suggested we stick to one hospital. I reminded him that we chose the Jewish in June and had the files moved, but Dr. Kavan insists that it is too long a wait at the Jewish for MRI’s. He did not use the word ‘hogwash’ but his face spelled it out; he intimated that this is an exaggeration, and if we ever want an MRI done at the Jewish, he would be most happy to arrange it. I mentioned to him that in my profession, working on a team seems to hold a very different meaning. He smiled, and we discussed the fact that Dr. Kavan works at two hospitals and so is not a consistent member of the ‘team’ at the Jewish.
Dr. Sultanen left it very open to us as to how often and for what reason we should see him. He offered to review the MRI’s from the Neuro every time we have one done, and to see us after having a chance to compare results. He said we are free to call him if we have any questions or concerns and he would be happy to meet with us at our bidding.
We left the hospital as if walking on air. When we arrived at my car I mentioned that I found a legal spot without a meter. I admitted that I saw this as a sign of good things to come today, and my superstitious thoughts were validated. While driving, I looked over and caught Gilly laughing. I asked, “What’s so funny?” thinking he was laughing at my driving skills (which would not be surprising). “Nothing’s funny. I’m just happy about my results.” Gilly has probably been more aware of the gravity of my worries than I had thought.
A huge weight seems to have been lifted from our shoulders. I know I’ll sleep soundly tonight.
posted by Gilly at 4:50 PM
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