We've had better weeks. Here's to the week end.
Nothing has really changed since my last blog posting, except the world as I once knew it. On top of the medical drama I have the supporting role in, us Montrealers are still hesitantly trying to peek out from under a black cloud of horror. The events at Dawson College touched us all, some more directly than others. We all have varying degrees of resilience in dealing with tragedy, depending on many variables.
I am still shaking from the initial news of shooting and barricades. I was on my way out of Vanier when I stopped to say hi to Roy. He asked if I’d heard the news, and proceeded to fill me in. I nearly fainted on the spot. I knew Yaron was on his way over, or had already arrived, and would be heading straight for the crime scene still unfolding. I spent a hysterical half hour trying to reach him on his cell phone, but the lines were all down in the downtown area. I wept with relief when I heard his voice telling me he was hurrying out of the area, but had no time to talk.
In the end, he is safe and sound, along with children of friends and relatives we know, not to mention some people connected to me through Vanier who happened to be at the day care at Dawson at the time.
The girl who lost her life was a classmate of Yaron’s, and another of the injured an old friend from elementary school. Too close to home to bear for us right now. What was is bad enough, but what could have been is simply unimaginable.
I just received the fateful call from Dr. Kavan, telling me that Gilly’s MRI is not perfect. He noticed some changes compared to the previous scan, but claims they are hard to interpret. He apologized for not getting back to me sooner (I’ve been waiting 8 exceptionally long days for his response), but felt the need to consult with experts, since it is not clear what is going on exactly. He thinks that perhaps the disease is becoming more aggressive; those were his exact words, by the way. The biology of the disease has changed a little bit (again, using his terms), and so he wants to see us at the Neuro on Wednesday afternoon in conjunction with members of his team.
He explained that he really couldn’t speak to me until he had consulted with others, and this occurred only yesterday, and apologized for my having to wait so long. He was out of town for 4 days (which no one was able to tell me, for some reason).
Next, he asked about Gilly’s current condition, which I filled him in on. He is still very lethargic, although there has been a very slight hint of improvement to overall spirit (smiles a bit more easily, and no longer paces; lost the jitters, probably due to being taken off of the Marinol). I admitted that I do not know why his mood is a bt better, because he started on an anti-depressant at the same time as restarting Decadron (the steroid). He said it is less likely to be attributed to the anti-depressant, which tends to take a while to have a marked effect. He did not hurry me off the phone, and showed sincere compassion in his voice, to the point that I was no longer resentful towards hm.
I remember when Dr. Mohr had us wait outside his office, only to be told that he too did not understand the change in MRI from the previous one. We were tortured by the waiting game then as well. Which doctor treated us more honestly / humanely? It’s hard to say.
I wonder now which previous MRI Dr. Kavan is comparing the August 30th MRI to??? That drama involving Dr. Mohr went on for quite some time as well, and was not necessarily fully addressed. Is Dr. Kavan is comparing this MRI to the one taken at the Jewish just after Gilly arrived in February (we gave him the CD), or to the one taken just before radiation / chemo started in late April. At the time, Dr. Sultanen explained that it was a matter of taking samples of slices made in slightly different locations (something like that). I wonder….?????
I questioned why we have to be seen at the Neuro, since we have chosen to be followed at the Jewish. He said that he can only read the scan at the computer over at the Neuro. I reminded him that Gilly’s doctors are waiting for the results at the Jewish (Dr. Sultanen and Dr. MacDonald). He explained that this is much more important at this stage of the game, and he feels strongly that he needs to follow through at the Neuro. I am in no position to argue, so I will postpone Wednesday’s appointment with the CNR team, and I have already postponed the appointment with Dr. Sultanen (scheduled for yesterday originally), since they do not have the data they need in order to proceed. I will have to take that fight up again later, when this Wednesday’s meeting is said and done.
Dr. Kavan advised me to remain strong (as if I have a choice). He said that Gilly’s condition is not likely to improve. I really was not expecting that it would, but hadn’t lost hope. This piece of advice pushed me down a notch, but did not rob me of my right to believe in the possibility that Gilly could be made more comfortable, or that an alternative cure could be somewhere waiting for us on the horizon. One must never give up hope, because it is what fuels our energy to live life to its fullest.
We’re off for Shabbat dinner at Fred’s. I need to be surrounded by chatter and loving people right now, and my wish has been granted. Gilly's coming along for the ride. I hope he finds a cozy spot to enjoy the presence of people as well.
I am still shaking from the initial news of shooting and barricades. I was on my way out of Vanier when I stopped to say hi to Roy. He asked if I’d heard the news, and proceeded to fill me in. I nearly fainted on the spot. I knew Yaron was on his way over, or had already arrived, and would be heading straight for the crime scene still unfolding. I spent a hysterical half hour trying to reach him on his cell phone, but the lines were all down in the downtown area. I wept with relief when I heard his voice telling me he was hurrying out of the area, but had no time to talk.
In the end, he is safe and sound, along with children of friends and relatives we know, not to mention some people connected to me through Vanier who happened to be at the day care at Dawson at the time.
The girl who lost her life was a classmate of Yaron’s, and another of the injured an old friend from elementary school. Too close to home to bear for us right now. What was is bad enough, but what could have been is simply unimaginable.
I just received the fateful call from Dr. Kavan, telling me that Gilly’s MRI is not perfect. He noticed some changes compared to the previous scan, but claims they are hard to interpret. He apologized for not getting back to me sooner (I’ve been waiting 8 exceptionally long days for his response), but felt the need to consult with experts, since it is not clear what is going on exactly. He thinks that perhaps the disease is becoming more aggressive; those were his exact words, by the way. The biology of the disease has changed a little bit (again, using his terms), and so he wants to see us at the Neuro on Wednesday afternoon in conjunction with members of his team.
He explained that he really couldn’t speak to me until he had consulted with others, and this occurred only yesterday, and apologized for my having to wait so long. He was out of town for 4 days (which no one was able to tell me, for some reason).
Next, he asked about Gilly’s current condition, which I filled him in on. He is still very lethargic, although there has been a very slight hint of improvement to overall spirit (smiles a bit more easily, and no longer paces; lost the jitters, probably due to being taken off of the Marinol). I admitted that I do not know why his mood is a bt better, because he started on an anti-depressant at the same time as restarting Decadron (the steroid). He said it is less likely to be attributed to the anti-depressant, which tends to take a while to have a marked effect. He did not hurry me off the phone, and showed sincere compassion in his voice, to the point that I was no longer resentful towards hm.
I remember when Dr. Mohr had us wait outside his office, only to be told that he too did not understand the change in MRI from the previous one. We were tortured by the waiting game then as well. Which doctor treated us more honestly / humanely? It’s hard to say.
I wonder now which previous MRI Dr. Kavan is comparing the August 30th MRI to??? That drama involving Dr. Mohr went on for quite some time as well, and was not necessarily fully addressed. Is Dr. Kavan is comparing this MRI to the one taken at the Jewish just after Gilly arrived in February (we gave him the CD), or to the one taken just before radiation / chemo started in late April. At the time, Dr. Sultanen explained that it was a matter of taking samples of slices made in slightly different locations (something like that). I wonder….?????
I questioned why we have to be seen at the Neuro, since we have chosen to be followed at the Jewish. He said that he can only read the scan at the computer over at the Neuro. I reminded him that Gilly’s doctors are waiting for the results at the Jewish (Dr. Sultanen and Dr. MacDonald). He explained that this is much more important at this stage of the game, and he feels strongly that he needs to follow through at the Neuro. I am in no position to argue, so I will postpone Wednesday’s appointment with the CNR team, and I have already postponed the appointment with Dr. Sultanen (scheduled for yesterday originally), since they do not have the data they need in order to proceed. I will have to take that fight up again later, when this Wednesday’s meeting is said and done.
Dr. Kavan advised me to remain strong (as if I have a choice). He said that Gilly’s condition is not likely to improve. I really was not expecting that it would, but hadn’t lost hope. This piece of advice pushed me down a notch, but did not rob me of my right to believe in the possibility that Gilly could be made more comfortable, or that an alternative cure could be somewhere waiting for us on the horizon. One must never give up hope, because it is what fuels our energy to live life to its fullest.
We’re off for Shabbat dinner at Fred’s. I need to be surrounded by chatter and loving people right now, and my wish has been granted. Gilly's coming along for the ride. I hope he finds a cozy spot to enjoy the presence of people as well.
posted by Gilly at 5:04 PM
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