Soon to be on the road again, due north
Last night was not great. I was hot (as usual) and so had the window wide open with fans going left and right. Gilly turned off the overhead one when he came to bed, but the one pointed at me seemed reasonable to me leave on. Not so for Mr. Ice Cube. I turned it on more of an angle away from Gilly, but this did not suffice. I simply left the now stuffy room to camp out on the couch in frustration; I felt closed in. It was a cool evening, but he was unable to tolerate the window being open. He offered to sleep downstairs, but I felt it was too selfish of me to allow this. Neither one of us felt that this was a good arrangement, but what could we do?
I forgot to turn the fan off when I left the room, so Gilly got up, intending to do so himself. He fell with a crash, and hurt his arm, probably because he got up too quickly. When Yaron arrived from camp for his day off in the middle of the night, he dashed to his dad’s side to say hello and ask how he is doing. Well, Gilly was honest and said, “Not well at all. I fell awhile ago and hurt myself.” Yaron cried himself to sleep, not realizing that he was actually in no worse shape than 10 days ago (or so) when he left for camp. The fall turned out not to be disastrous in any way (Thi examined him this morning). It was just a lousy night for all 3 of us. Liylah was in heaven, though, because her Canadian idol, Yaron was home for a day.
A long medical day had we! Physiotherapy was a bit slower than last time, so we had to cut it short; we ran up to get blood tests done as previously scheduled, and then zipped down for the last part of the physiotherapy session. Thi added some Tai Chi this time, and a few more exercises with the ball to be done at home.
We waited the usual hour and a half for Dr. Kavan. Gilly used the time to work on Yoga breaths, and he fell asleep. I did not mind the wait; I had the mindset that we were in for the long haul today, so I relaxed and read a novel.
Gilly spoke to Dr. Kavan about his poor eyesight, and expressed his hope that the maintenance treatment could be postponed until his eyes improve; he wants to begins in 3 months or so.
Dr. Kavan explained that brain tissue improves very slowly; this is typical and predictable because radiation literally burns your brain and causes inflammation in the area for up to 3 to 4 months. He appealed to Gilly, “You must be patient; if you are lucky, it will improve. The tumour is not in a good position, so accept your reality, your new way of life. You are starting a transition and must learn to live your life with a chronic disease.” He told Gilly point blank that waiting for improvement to eyesight is an irrational way to make a decision, because there is no guarantee (and never was) that his vision will ever improve. Temodal is not likely to affect whether it does or does not; if anything, it MAY help to prevent further deterioration for a longer period of time. It is still very experimental, so again, there is no guarantee that it will do anything whatsoever. He feels it is in Gilly’s best interest to take the chance that it will help arrest the growth of the tumour.
I asked the forbidden question (because I am afraid of false hope): “You explained that it is possible that the Temodal will help keep the tumour under control, but I wonder if there is any chance it will shrink it?” He said it is unlikely, but not impossible. Positive thinking was advised; again he emphasized the importance of going on with life as opposed to waiting for change.
It’s WAY easier said than done, of course; we all want to give Gilly this same advice, which is why I have mustered up the resources that will allow him to rehabilitate. Gilly has to buy into this line of reasoning on his own. I plan to continue paving the way for this to occur, without pushing.
Dr. Kavan and Gilly left the final decision for two weeks’ time. He was extremely cautious not to push the decision, and was blatantly obvious in a dignified, empathetic manner. Gilly left saying he plans to resume chemo in two weeks, and Dr. Kavan filled the prescriptions and instructed us to call his office to let him know for certain. He will see Gilly again regardless on September 7th.
This time, the dose of Temodal is slightly more than double, so he will be armed with even more of the anti-nausea medication. He will be tired and perhaps feel unwell for 5 days (or it could drag for 7 days) out of 28 days. This cycle will continue for 9 to 12 months, I believe. He prescribed 3 months worth for now.
A few people have asked me why a PET scan was never done. Dr. Kavan explained that it is not necessary with this particular disease, because they know the route it takes.
The good news is that Gilly’s blood continues to be perfect, according to Dr, Kavan (what he chooses to test, of course; there are so many things we can find out from blood samples, but they do not look for everything, of course).
We picked up more whey protein, and dashed home for lunch and a quick opportune visit with Yaron. We will have dinner with our two sweethearts this evening. A real treat for us!
While sitting in Dr. Sultanen’s waiting room later in the afternoon I reminded Gilly of the statement he made way back in March; he felt as though he were watching the situation from a distance, uninvolved. I wondered if he still feels the same way. “Sometimes,” he revealed. Upon furhter probing (where you see…there were questions to encourage more explanation; remember that word finding is dfficult for Gilly). He expanded, “I feel like I’m constantly being used by the system…Violated…They’re not giving me the right answers; the ones I want to hear…I’m angry at the whole situation…with Thi, well he has a different status, a different way of running things, he can make things work…It’s the same with Nelda.”
This was my cue to help him sort out why to some extent. I asked if it is because they are able to help in a concrete way, and he agreed. I slipped in the part about the MAB possibly being able to provide certain materials to make life easier too, and he claimed he is open to what they can offer, once the ‘intake’ process is complete (the visual assessment).
I have arranged for him to speak to a professional on Monday who is trained to help people sort out their feelings. At the moment, Gilly has given me permission to pursue this path; we’ll see what Monday brings. It’s important to find the right match.
Dr. Sultanen met with us rather briefly, but he provided some interesting information. The taste of concrete is likely to be as a result of the radiation, which is a relief, because it should disappear eventually. I have noticed that Gilly has more trouble swallowing than usual, and this too was caused by radiation.
The Decadron is now being tapered further. Symptoms to look for are headaches, vision (oy vey) and arm weakness. He elaborated by adding, “Anything that doesn’t look right.” Talk about everything being relative! Fatigue and muscle pain are to be expected.
He wants to see Gilly after his next MRI to discuss the findings. We must call him as soon as it is officially scheduled. We’re still waiting for the red tape to set the procedure in motion, mainly, I suspect, because Dr. Kavan insists on using the Neuro. I could be wrong, though, because the second MRI scheduled by Dr. Mohr took 2 months or so, and we were told of the appointment the same day!
I forgot to turn the fan off when I left the room, so Gilly got up, intending to do so himself. He fell with a crash, and hurt his arm, probably because he got up too quickly. When Yaron arrived from camp for his day off in the middle of the night, he dashed to his dad’s side to say hello and ask how he is doing. Well, Gilly was honest and said, “Not well at all. I fell awhile ago and hurt myself.” Yaron cried himself to sleep, not realizing that he was actually in no worse shape than 10 days ago (or so) when he left for camp. The fall turned out not to be disastrous in any way (Thi examined him this morning). It was just a lousy night for all 3 of us. Liylah was in heaven, though, because her Canadian idol, Yaron was home for a day.
A long medical day had we! Physiotherapy was a bit slower than last time, so we had to cut it short; we ran up to get blood tests done as previously scheduled, and then zipped down for the last part of the physiotherapy session. Thi added some Tai Chi this time, and a few more exercises with the ball to be done at home.
We waited the usual hour and a half for Dr. Kavan. Gilly used the time to work on Yoga breaths, and he fell asleep. I did not mind the wait; I had the mindset that we were in for the long haul today, so I relaxed and read a novel.
Gilly spoke to Dr. Kavan about his poor eyesight, and expressed his hope that the maintenance treatment could be postponed until his eyes improve; he wants to begins in 3 months or so.
Dr. Kavan explained that brain tissue improves very slowly; this is typical and predictable because radiation literally burns your brain and causes inflammation in the area for up to 3 to 4 months. He appealed to Gilly, “You must be patient; if you are lucky, it will improve. The tumour is not in a good position, so accept your reality, your new way of life. You are starting a transition and must learn to live your life with a chronic disease.” He told Gilly point blank that waiting for improvement to eyesight is an irrational way to make a decision, because there is no guarantee (and never was) that his vision will ever improve. Temodal is not likely to affect whether it does or does not; if anything, it MAY help to prevent further deterioration for a longer period of time. It is still very experimental, so again, there is no guarantee that it will do anything whatsoever. He feels it is in Gilly’s best interest to take the chance that it will help arrest the growth of the tumour.
I asked the forbidden question (because I am afraid of false hope): “You explained that it is possible that the Temodal will help keep the tumour under control, but I wonder if there is any chance it will shrink it?” He said it is unlikely, but not impossible. Positive thinking was advised; again he emphasized the importance of going on with life as opposed to waiting for change.
It’s WAY easier said than done, of course; we all want to give Gilly this same advice, which is why I have mustered up the resources that will allow him to rehabilitate. Gilly has to buy into this line of reasoning on his own. I plan to continue paving the way for this to occur, without pushing.
Dr. Kavan and Gilly left the final decision for two weeks’ time. He was extremely cautious not to push the decision, and was blatantly obvious in a dignified, empathetic manner. Gilly left saying he plans to resume chemo in two weeks, and Dr. Kavan filled the prescriptions and instructed us to call his office to let him know for certain. He will see Gilly again regardless on September 7th.
This time, the dose of Temodal is slightly more than double, so he will be armed with even more of the anti-nausea medication. He will be tired and perhaps feel unwell for 5 days (or it could drag for 7 days) out of 28 days. This cycle will continue for 9 to 12 months, I believe. He prescribed 3 months worth for now.
A few people have asked me why a PET scan was never done. Dr. Kavan explained that it is not necessary with this particular disease, because they know the route it takes.
The good news is that Gilly’s blood continues to be perfect, according to Dr, Kavan (what he chooses to test, of course; there are so many things we can find out from blood samples, but they do not look for everything, of course).
We picked up more whey protein, and dashed home for lunch and a quick opportune visit with Yaron. We will have dinner with our two sweethearts this evening. A real treat for us!
While sitting in Dr. Sultanen’s waiting room later in the afternoon I reminded Gilly of the statement he made way back in March; he felt as though he were watching the situation from a distance, uninvolved. I wondered if he still feels the same way. “Sometimes,” he revealed. Upon furhter probing (where you see…there were questions to encourage more explanation; remember that word finding is dfficult for Gilly). He expanded, “I feel like I’m constantly being used by the system…Violated…They’re not giving me the right answers; the ones I want to hear…I’m angry at the whole situation…with Thi, well he has a different status, a different way of running things, he can make things work…It’s the same with Nelda.”
This was my cue to help him sort out why to some extent. I asked if it is because they are able to help in a concrete way, and he agreed. I slipped in the part about the MAB possibly being able to provide certain materials to make life easier too, and he claimed he is open to what they can offer, once the ‘intake’ process is complete (the visual assessment).
I have arranged for him to speak to a professional on Monday who is trained to help people sort out their feelings. At the moment, Gilly has given me permission to pursue this path; we’ll see what Monday brings. It’s important to find the right match.
Dr. Sultanen met with us rather briefly, but he provided some interesting information. The taste of concrete is likely to be as a result of the radiation, which is a relief, because it should disappear eventually. I have noticed that Gilly has more trouble swallowing than usual, and this too was caused by radiation.
The Decadron is now being tapered further. Symptoms to look for are headaches, vision (oy vey) and arm weakness. He elaborated by adding, “Anything that doesn’t look right.” Talk about everything being relative! Fatigue and muscle pain are to be expected.
He wants to see Gilly after his next MRI to discuss the findings. We must call him as soon as it is officially scheduled. We’re still waiting for the red tape to set the procedure in motion, mainly, I suspect, because Dr. Kavan insists on using the Neuro. I could be wrong, though, because the second MRI scheduled by Dr. Mohr took 2 months or so, and we were told of the appointment the same day!
posted by Gilly at 6:04 PM
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