The whole megillah
It’s important to go back in time a bit to put this whole affair into perspective:
We originally chose Dr. Kavan and his team at the Neuro to care for Gilly, since he advised us that in matters of the brain, the Neuro is far superior to the Jewish. We accepted his advice and signed on for radiation at the Mtl. General (as is the system) and oncology follow-up with the Neuro.
We were bumped from the General as the waiting list was too long, but assured that we would have radiation at the Jewish and be followed otherwise by Dr. Kavan at the Neuro.
Due to this ‘break from typical’ protocol, Gilly seemed to fall through the cracks. The oncology nurse at the Neuro didn’t answer my calls when I was concerned about Gilly having been in contact with Pneumonia, but the radiation nurse from the Jewish did. This was repeated when I called about Gilly requiring dental work…his blood was not taken at the Neuro ever, so Dr. Sultanen had it taken at the Jewish and so on…
I complained to Dr. Kavan, and as a result he ‘flippantly’ said to just call his secretary and have the file switched permanently to the Jewish. I did so, and by July we finally had it all changed over.
We have been served extremely well at the Jewish through the Oncology Dept. and its many programs, notably the CNR program, which we rely on tremendously to track and support Gilly’s overall well being.
When we saw Dr. Kavan in July for follow-up after radiation, he asked us to have the MRI done at the Neuro before our next visit because he prefers the machines at the Neuro, and said there would not be so long a wait. I made the appointment as he requested. I even had to mail out the order to his secretary at the Neuro, and the MRI was done on August 30th.
We met with Dr. Kavan on September 7th only to discover that he had not looked at the MRI scan, and couldn’t access the results because the scan was sitting at the Neuro and he saw us (as he had been doing) at the Jewish. He asked me to call him at the Neuro the very next afternoon and he would relay what he assured me would be ‘not surprising’ results. He was wrong.
I called, and you who have been reading my blog all know that it took 8 days to finally get him to return my call. He proceeded to tell me that he noticed some changes compared to the previous scan, but claims they are hard to interpret. He thinks that perhaps the disease is becoming more aggressive; the biology of the disease has changed a little bit. He said his secretary would call and make an appointment to see him at the Neuro with his team on Wednesday afternoon.
After waiting all day Monday for a call, I decided to take the bull by the horn and contact his secretary myself. She said he’s all booked up for Wednesday and she received no such instructions from Dr. Kavan. I was persistent, so she went to get his chart and curtly announced that Gilly should come in for 9:00 a.m. on Wednesday. I revealed my frustration and insisted that Dr. Kavan said he’d see us on Wednesday afternoon. In truth, he had clearly mentioned the afternoon and this was now Tuesday afternoon and I had not yet cancelled my two Wednesday morning classes. She said that this would be impossible (but earlier I knew she said Wednesday at anytime would be impossible, so I pushed). I told her that my husband’s MRI shows that there has been a change; “This is a very important meeting, and I teach in the morning,” I explained. “3:00 Wednesday,” she barked. Being pushy is necessary sometimes.
We waited for 1 ½ hours to be ushered into a room with Dr. Kavan and Dr. LeBlanc. He is a neurosurgeon at the MRI, and was consulted on this matter because Dr. Kavan claimed that Dr. Mohr (from the Jewish) is out of town.
Dr. Kavan explained that the contrast material that was injected during the MRI seems to show more than in the previous scan, meaning there could be more growth. The problem, he went on, lies in the fact that he cannot compare one scan to another because the last scan was done at the Jewish. Hello! This is not new information!! He said that at the Jewish there is a policy which prevents the radiology department from comparing the old scan at the Jewish to the new scan that was done at the Neuro, even if we bring the scan over to that hospital.
I stopped him there and asked which scan he has been comparing this one to. I wondered if he was looking at this one against the one I gave him way back in March when we first saw him, or if he’s comparing it to the report on the one done in late April, when Dr. Mohr noted that there seemed to be a change from the scan done at the Jewish in February. Dr. Sultanen allayed our fears the following week, but I wonder…..
Dr. Kavan said that he has no other scan to compare it to, because they were not done at the Neuro, so he has only a written report. The first step, in his view, is to get the scans over to one hospital, and it must be the Neuro because the Jewish refuses to do this.
Dr. Leblanc stepped in to explain that the terminology used in the report from the Jewish is slightly different from that used at the Neuro. He pointed out that he has no evidence to say that there has been any change at all; it could be a matter of different descriptors. He reiterated that this is why they are still not sure how to interpret the results. For now, he assured us that there is no urgency; there has certainly not been a dramatic change.
At this point my ears started to burn. I could not believe what I was hearing. I double checked to see if I understood what I was being asked to do; bring the actual scans over to the Neuro to be analyzed. Yes, this is what Dr. Kavan suggests and is adamantly insisting I do. I reminded him that we are being seen now at the Jewish because we fell through the cracks at the Neuro, but he sloughed off the accusation and emphasized that the expertise at the Neuro is far superior to the Jewish when it comes to matters of the brain. He wants Gilly to be seen at the Neuro for all scans and neuro-oncology assessments.
So technically, I dragged Gilly down to the Neuro to sit in a waiting room for 1 ½ hours, only to find out that the answers are still not available, and that I have some homework to do in terms of running around to get the scans. I could have spent the 1 ½ hours running around attending to these matters instead of waiting for virtually nothing.
I am beginning to be increasingly suspicious of the whole situation. I admitted to both doctors that the whole affair seems rather political. “Aren’t the hospitals connected to one another?” I asked. Not so, I was told.
I asked if we could continue to be followed by our wonderful primary nurse at the Jewish, Erica, and the amazing CNR team. “Yes” he promised. It is just that the waiting period for an MRI at the Jewish is about 6 months, he claimed.
I tried to tell him that a 6 months wait is not so; Gilly had one just after the shunt was installed in late February (a week following the one we had done privately), and another 8 weeks later at Dr. Mohr’s request. After Gilly was released from the hospital in March, Dr. Mohr told us we’d be called for an MRI appointment 6 to 8 weeks later and we were. Dr. Kavan would not listen; he cut me off (I suppose too busy to listen to what he sees as unimportant rebuttal).
We were escorted out with instructions to get those scans as soon as possible. Gilly spoke up once; “How long is all this going to take?” Dr, Kavan estimated it would take only a couple of days. I revealed that last time we asked to have copies of the scan we waited at least a week; I remember having to nag them in the MRI department because family and friends world wide were pressuring me to send the information out as soon as possible for consultation purposes. Dr. Kavan used this as an example of the red tape at the Jewish.
I slept a mere 20 minutes last night, tossing and turning, wondering what news would befall us today. I’m relieved on one hand, because they did not present us with grave news, but disgusted on the other hand for obvious reasons. You have to wonder what some doctors are aware of and have the potential to become sensitive to in terms of what families experience in the face of a critical health issue. Does Dr. Kavan realize what the waiting does to us when it is revealed that the treatment may (or may not) be working. He caused this problem, in my estimation, by not being straight with us in the first place. He had no business sending us to the Neuro in late August when we had officially chosen to remain solely with the services at the Jewish. I’m guessing he knew we’d have this problem, because he said over and over again that he has several patients who he sees at both institutions.
My game plan is as follows; I will satisfy Dr. Kavan’s request, because I want the final verdict sooner than later. I shall contact Dr. Sultanen and Dr. MacDonald and explain why they are not able to see the MRI results. I must attempt to investigate the sharing of information problem further; maybe even speak to the ombudsman at the hospital(s) to ensure that we are being treated fairly (not sure when I’ll find the time to do this, but I have to consider this angle, because the mess that has been created reeks big time). Most importantly, I have to tread carefully at least for the meantime, so as not to cut off our own noses before vital information is passed down to us, and I do not want to extend the waiting period by angering Dr. Kavan.
If the experts at the Neuro can keep Gilly on as a patient regarding ‘brain’ matters, and the chemo or whatever plan for treatment continues to be followed at the Jewish, AND if Gilly’s participation in the CNR program remains an option, so be it. But if the information war persists and prevents the professionals at the Jewish who are following Gilly from obtaining what they need, the dilemma will need to be addressed further. The whole situation seems convoluted; it’s like we’re performing as players in a slapstick black comedy.
Tomorrow morning the fence crew is scheduled to arrive at 8:00. Jerry will take Gilly to physio. Once the workers are well on their way, I will go off on the ordering of copies of MRI scans mission. Hopefully I will not encounter any snags in the process.
I’m thoroughly exhausted, so sleep is what I need most right now. Good night all, and have a pleasant tomorrow.
By the by, my boyfriend of 24 years is resting peacefully on the couch, not visibly perturbed by the turn of events today, but a bit tuckered out by the ordeal of waiting around for so long. I’m off to offer him an evening smoothie before heading off to bed.
We originally chose Dr. Kavan and his team at the Neuro to care for Gilly, since he advised us that in matters of the brain, the Neuro is far superior to the Jewish. We accepted his advice and signed on for radiation at the Mtl. General (as is the system) and oncology follow-up with the Neuro.
We were bumped from the General as the waiting list was too long, but assured that we would have radiation at the Jewish and be followed otherwise by Dr. Kavan at the Neuro.
Due to this ‘break from typical’ protocol, Gilly seemed to fall through the cracks. The oncology nurse at the Neuro didn’t answer my calls when I was concerned about Gilly having been in contact with Pneumonia, but the radiation nurse from the Jewish did. This was repeated when I called about Gilly requiring dental work…his blood was not taken at the Neuro ever, so Dr. Sultanen had it taken at the Jewish and so on…
I complained to Dr. Kavan, and as a result he ‘flippantly’ said to just call his secretary and have the file switched permanently to the Jewish. I did so, and by July we finally had it all changed over.
We have been served extremely well at the Jewish through the Oncology Dept. and its many programs, notably the CNR program, which we rely on tremendously to track and support Gilly’s overall well being.
When we saw Dr. Kavan in July for follow-up after radiation, he asked us to have the MRI done at the Neuro before our next visit because he prefers the machines at the Neuro, and said there would not be so long a wait. I made the appointment as he requested. I even had to mail out the order to his secretary at the Neuro, and the MRI was done on August 30th.
We met with Dr. Kavan on September 7th only to discover that he had not looked at the MRI scan, and couldn’t access the results because the scan was sitting at the Neuro and he saw us (as he had been doing) at the Jewish. He asked me to call him at the Neuro the very next afternoon and he would relay what he assured me would be ‘not surprising’ results. He was wrong.
I called, and you who have been reading my blog all know that it took 8 days to finally get him to return my call. He proceeded to tell me that he noticed some changes compared to the previous scan, but claims they are hard to interpret. He thinks that perhaps the disease is becoming more aggressive; the biology of the disease has changed a little bit. He said his secretary would call and make an appointment to see him at the Neuro with his team on Wednesday afternoon.
After waiting all day Monday for a call, I decided to take the bull by the horn and contact his secretary myself. She said he’s all booked up for Wednesday and she received no such instructions from Dr. Kavan. I was persistent, so she went to get his chart and curtly announced that Gilly should come in for 9:00 a.m. on Wednesday. I revealed my frustration and insisted that Dr. Kavan said he’d see us on Wednesday afternoon. In truth, he had clearly mentioned the afternoon and this was now Tuesday afternoon and I had not yet cancelled my two Wednesday morning classes. She said that this would be impossible (but earlier I knew she said Wednesday at anytime would be impossible, so I pushed). I told her that my husband’s MRI shows that there has been a change; “This is a very important meeting, and I teach in the morning,” I explained. “3:00 Wednesday,” she barked. Being pushy is necessary sometimes.
We waited for 1 ½ hours to be ushered into a room with Dr. Kavan and Dr. LeBlanc. He is a neurosurgeon at the MRI, and was consulted on this matter because Dr. Kavan claimed that Dr. Mohr (from the Jewish) is out of town.
Dr. Kavan explained that the contrast material that was injected during the MRI seems to show more than in the previous scan, meaning there could be more growth. The problem, he went on, lies in the fact that he cannot compare one scan to another because the last scan was done at the Jewish. Hello! This is not new information!! He said that at the Jewish there is a policy which prevents the radiology department from comparing the old scan at the Jewish to the new scan that was done at the Neuro, even if we bring the scan over to that hospital.
I stopped him there and asked which scan he has been comparing this one to. I wondered if he was looking at this one against the one I gave him way back in March when we first saw him, or if he’s comparing it to the report on the one done in late April, when Dr. Mohr noted that there seemed to be a change from the scan done at the Jewish in February. Dr. Sultanen allayed our fears the following week, but I wonder…..
Dr. Kavan said that he has no other scan to compare it to, because they were not done at the Neuro, so he has only a written report. The first step, in his view, is to get the scans over to one hospital, and it must be the Neuro because the Jewish refuses to do this.
Dr. Leblanc stepped in to explain that the terminology used in the report from the Jewish is slightly different from that used at the Neuro. He pointed out that he has no evidence to say that there has been any change at all; it could be a matter of different descriptors. He reiterated that this is why they are still not sure how to interpret the results. For now, he assured us that there is no urgency; there has certainly not been a dramatic change.
At this point my ears started to burn. I could not believe what I was hearing. I double checked to see if I understood what I was being asked to do; bring the actual scans over to the Neuro to be analyzed. Yes, this is what Dr. Kavan suggests and is adamantly insisting I do. I reminded him that we are being seen now at the Jewish because we fell through the cracks at the Neuro, but he sloughed off the accusation and emphasized that the expertise at the Neuro is far superior to the Jewish when it comes to matters of the brain. He wants Gilly to be seen at the Neuro for all scans and neuro-oncology assessments.
So technically, I dragged Gilly down to the Neuro to sit in a waiting room for 1 ½ hours, only to find out that the answers are still not available, and that I have some homework to do in terms of running around to get the scans. I could have spent the 1 ½ hours running around attending to these matters instead of waiting for virtually nothing.
I am beginning to be increasingly suspicious of the whole situation. I admitted to both doctors that the whole affair seems rather political. “Aren’t the hospitals connected to one another?” I asked. Not so, I was told.
I asked if we could continue to be followed by our wonderful primary nurse at the Jewish, Erica, and the amazing CNR team. “Yes” he promised. It is just that the waiting period for an MRI at the Jewish is about 6 months, he claimed.
I tried to tell him that a 6 months wait is not so; Gilly had one just after the shunt was installed in late February (a week following the one we had done privately), and another 8 weeks later at Dr. Mohr’s request. After Gilly was released from the hospital in March, Dr. Mohr told us we’d be called for an MRI appointment 6 to 8 weeks later and we were. Dr. Kavan would not listen; he cut me off (I suppose too busy to listen to what he sees as unimportant rebuttal).
We were escorted out with instructions to get those scans as soon as possible. Gilly spoke up once; “How long is all this going to take?” Dr, Kavan estimated it would take only a couple of days. I revealed that last time we asked to have copies of the scan we waited at least a week; I remember having to nag them in the MRI department because family and friends world wide were pressuring me to send the information out as soon as possible for consultation purposes. Dr. Kavan used this as an example of the red tape at the Jewish.
I slept a mere 20 minutes last night, tossing and turning, wondering what news would befall us today. I’m relieved on one hand, because they did not present us with grave news, but disgusted on the other hand for obvious reasons. You have to wonder what some doctors are aware of and have the potential to become sensitive to in terms of what families experience in the face of a critical health issue. Does Dr. Kavan realize what the waiting does to us when it is revealed that the treatment may (or may not) be working. He caused this problem, in my estimation, by not being straight with us in the first place. He had no business sending us to the Neuro in late August when we had officially chosen to remain solely with the services at the Jewish. I’m guessing he knew we’d have this problem, because he said over and over again that he has several patients who he sees at both institutions.
My game plan is as follows; I will satisfy Dr. Kavan’s request, because I want the final verdict sooner than later. I shall contact Dr. Sultanen and Dr. MacDonald and explain why they are not able to see the MRI results. I must attempt to investigate the sharing of information problem further; maybe even speak to the ombudsman at the hospital(s) to ensure that we are being treated fairly (not sure when I’ll find the time to do this, but I have to consider this angle, because the mess that has been created reeks big time). Most importantly, I have to tread carefully at least for the meantime, so as not to cut off our own noses before vital information is passed down to us, and I do not want to extend the waiting period by angering Dr. Kavan.
If the experts at the Neuro can keep Gilly on as a patient regarding ‘brain’ matters, and the chemo or whatever plan for treatment continues to be followed at the Jewish, AND if Gilly’s participation in the CNR program remains an option, so be it. But if the information war persists and prevents the professionals at the Jewish who are following Gilly from obtaining what they need, the dilemma will need to be addressed further. The whole situation seems convoluted; it’s like we’re performing as players in a slapstick black comedy.
Tomorrow morning the fence crew is scheduled to arrive at 8:00. Jerry will take Gilly to physio. Once the workers are well on their way, I will go off on the ordering of copies of MRI scans mission. Hopefully I will not encounter any snags in the process.
I’m thoroughly exhausted, so sleep is what I need most right now. Good night all, and have a pleasant tomorrow.
By the by, my boyfriend of 24 years is resting peacefully on the couch, not visibly perturbed by the turn of events today, but a bit tuckered out by the ordeal of waiting around for so long. I’m off to offer him an evening smoothie before heading off to bed.
posted by Gilly at 8:44 PM
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