Saturday, July 31, 2010
Saturday afternoon
We are watching as B returns from her confused state. She is not all
the way back as yet. She does not know what hospital
she is in, though she has been told and has seen her S-K
doctors on their flying visits. I don't know when she'll be
discharged --- she does not seem ready to me --- but
they continually need beds, so we'll see.
Friday, July 30, 2010
Muddling through
Well folks, things are normal as I fumble my way through life.
The doctor at Beth Israel wanted me to see a surgeon and sent
me to see Dr. Picone. He is a Venezuelan who wanted to be an
astrophysicist but became a surgeon. He treated my wrist in a
way somewhat like what Steve Childress had advocated, but
with more serious paraphernalia. On the way back to S-K I
bought a fruit cup and ate it in their lobby before going up to
B's room. Once there I could not find my glasses so I went to
their equivalent of a lost and found, which I located after some
conversations. They produced a large box of eyeglasses and
cases but mine was not in it. So they told me to choose
a pair that worked for me and to help myself to a case. So now
I have a new pair of reading glasses. But I had lost all-purpose
glasses so I called Dr. Picone's office and asked. They
remembered all the places in there that I had been too and
looked. No luck. Then they said 'look into the bottom of your
bag.' I told them that I had already done that but, after
hanging up, I looked in an unaccustomed pocket ...
Thursday, July 29, 2010
It pays to procrastinate
Last night two young oncologists (Dr. Tao and a
man whose name is as long as any name I have ever seen and irreproducible) told me that
B was still having seizures as detected by the EEG monitoring device that is attached to
her all the time as part of the neurosurvaillance procedure. In the seizure mode, several
neurons near the the tumor are firing in synchrony. The fear is that they could entrain the whole brain in what is (or used to be) known as a grand mal seizure. This is serious stuff
and they are trying to halt the seizure before that happens. Since the keppra and ativan are not completely successful, the seizure team wishes to use phenobarbital in an attempt to quiet the remaining coherent oscillations. This has the risk of stopping B's breathing. If that happens, they'll need to intubate to force her to breathe. I was asked to approve the procedure both as to the use of pheno and intubation, if necessary. At my request, they greed to stay with the ativan until Thursday morning.
I had sent off few notes during the hectic Wednesday in S-K and went home having eaten in their cafeteria. I answered some emails and went to bed. Early next morning, I checked the email and found a letter from Sara at NWU Med School. She reported this: We have talked with a Chicago friend who is a neurologist. His specialty is not oncology, but in his own experience, patients on ORAL phenorbital show improvement within 48 hours, and do not need intubation. It is the IV treatment with much higher doses that carries the risk that breathing might stop. Is there a chance to use oral phenorbital? Or do the doctors at Sloan-Kettering think that it is really urgent to get her out of this subthreshold oscillatory state, and that the IV delivery of a high dose is the only effective way to do so? It seems that the oral treatment, if feasible, would be less of a trauma. But only the local doctors can evaluate the urgency factor."
On reading this, I immediately tried to phone Dr. Tao, who was on night duty, to discuss this with her and reached her at the nurses' station at 6:00. I have trouble hearing what Dr. T. says even when she is in front of me. On the phone, I heard her less well so I won't try to repeat what I thought she said for fear of misrepresenting her statements. But the upshot was that the plan was still in place. I went to the Beth Israel clinic for its eight o'clock opening to have my wrist re-bandaged and got to S-K by nine. (It seems weird to go to a clinic for minor attention and then to a hospital for a visit when the hospital could easily do it all.) B's speech was somewhat improved, though it was not clear what she was trying to say much of the time. The surprise to me was that they had not yet administered the phenobarbital. The nurse on duty had no instructions about this. Just before lunch time, Dr. Omuro appeared on rounds with a very few senior looking associates. He said that the family had refused phenobarbital so they had not administered it. I told him that I had accepted its use but had merely asked for a delay till morning. He said that in that case they would proceed. I told him of the news from Northwestern and he said of course they were going to do oral pheno. It was a flying visit but I suppose that we had covered the essentials. Soon after the departure of the oncology team, a doctor whom we had seen once before appeared and tried to get Barbara to sing Happy Birthday. She said she had missed the group on rounds and would try to catch them up. I asked whether I could first ask an indelicate question. She agreed and I asked how the confusion about what I had decided about pheno could have arisen and was it not a serious problem. She said it was a simple miscommunication and nothing serious. She departed saying that she would return soon and seven hours later has still not been seen. I begin to realize that various unanticipated things must arise in such places and many of them involve very serious issues.
It is very difficult for a layman to judge the importance of various issues, especially one who works on chaos or turbulence where small causes have big effects. The doctor with the long name came and said that since B did not have seizures during the night it was not clear that they would need to administer the pheno. He said he would check with the two senior people in charge. He returned and said that it seemed that if they did use pheno, it might well be oral. They said they would authorize a puree meal and, if she ate it, she would be cleared for oral pheno. So I ordered potato leek soup, apple sauce, chocolate ice cream and apple juice and she ate it all for lunch. She even asked for more apple sauce. A nurse fed her but she took over in the middle of the ice cream. At dinner time another nurse ordered a pureed meal and I fed her some of it and the rest she ate (with gusto) herself. So swallowing is no problem and oral phenobarbital is on schedule for 10:00 when it will also help her sleep.
I had sent off few notes during the hectic Wednesday in S-K and went home having eaten in their cafeteria. I answered some emails and went to bed. Early next morning, I checked the email and found a letter from Sara at NWU Med School. She reported this: We have talked with a Chicago friend who is a neurologist. His specialty is not oncology, but in his own experience, patients on ORAL phenorbital show improvement within 48 hours, and do not need intubation. It is the IV treatment with much higher doses that carries the risk that breathing might stop. Is there a chance to use oral phenorbital? Or do the doctors at Sloan-Kettering think that it is really urgent to get her out of this subthreshold oscillatory state, and that the IV delivery of a high dose is the only effective way to do so? It seems that the oral treatment, if feasible, would be less of a trauma. But only the local doctors can evaluate the urgency factor."
On reading this, I immediately tried to phone Dr. Tao, who was on night duty, to discuss this with her and reached her at the nurses' station at 6:00. I have trouble hearing what Dr. T. says even when she is in front of me. On the phone, I heard her less well so I won't try to repeat what I thought she said for fear of misrepresenting her statements. But the upshot was that the plan was still in place. I went to the Beth Israel clinic for its eight o'clock opening to have my wrist re-bandaged and got to S-K by nine. (It seems weird to go to a clinic for minor attention and then to a hospital for a visit when the hospital could easily do it all.) B's speech was somewhat improved, though it was not clear what she was trying to say much of the time. The surprise to me was that they had not yet administered the phenobarbital. The nurse on duty had no instructions about this. Just before lunch time, Dr. Omuro appeared on rounds with a very few senior looking associates. He said that the family had refused phenobarbital so they had not administered it. I told him that I had accepted its use but had merely asked for a delay till morning. He said that in that case they would proceed. I told him of the news from Northwestern and he said of course they were going to do oral pheno. It was a flying visit but I suppose that we had covered the essentials. Soon after the departure of the oncology team, a doctor whom we had seen once before appeared and tried to get Barbara to sing Happy Birthday. She said she had missed the group on rounds and would try to catch them up. I asked whether I could first ask an indelicate question. She agreed and I asked how the confusion about what I had decided about pheno could have arisen and was it not a serious problem. She said it was a simple miscommunication and nothing serious. She departed saying that she would return soon and seven hours later has still not been seen. I begin to realize that various unanticipated things must arise in such places and many of them involve very serious issues.
It is very difficult for a layman to judge the importance of various issues, especially one who works on chaos or turbulence where small causes have big effects. The doctor with the long name came and said that since B did not have seizures during the night it was not clear that they would need to administer the pheno. He said he would check with the two senior people in charge. He returned and said that it seemed that if they did use pheno, it might well be oral. They said they would authorize a puree meal and, if she ate it, she would be cleared for oral pheno. So I ordered potato leek soup, apple sauce, chocolate ice cream and apple juice and she ate it all for lunch. She even asked for more apple sauce. A nurse fed her but she took over in the middle of the ice cream. At dinner time another nurse ordered a pureed meal and I fed her some of it and the rest she ate (with gusto) herself. So swallowing is no problem and oral phenobarbital is on schedule for 10:00 when it will also help her sleep.
Wednesday, July 28, 2010
A traumatic day
Early yesterday, B had a seizure and the right side of her face went into convulsions.
This bulletin describes how that started but this news itself may be enough for some who
are following this saga. It was a such a jarring experience for me that I wanted to put
down this account of the onset.
On Tuesday, July 27, we were scheduled for our first meeting with Dr. Timothy Chan, radiation oncologist. We were to learn the proposed schedule of radiation/chemo treatments for Barbara. On the day, I woke up quite early but Barbara had gotten up before me and was in the bathroom. I asked if she were up for the day and got no response. I repeated the question - still no answer. So I proceeded with the making of coffee. When B emerged from the bathroom she headed for bed and I followed to ask her again whether she was ready for coffee. She was standing by the bed with the right side of her face convulsing periodically. The worst part was the bewildered look on her face. She could not speak. She lay down on the bed.
The literature I had read suggested that seizure victims should lie on their sides to facilitate breathing and I tried to persuade her to turn on her side without success. She whispered something but it was inaudible.
I had read that that if the seizure lasted more that five minutes, one should get emergency assistance. But the paper on which the relevant information such as the emergency number was not where it had been. I called Sloan-Kettering and, after a couple of tries, got the right number and reached a doctor whose name I did not hear. He said I should get her to the nearest ER. That is NYU for us but, as that is fairly near to S-K, we agreed that I should take her there. I called some friends who have cars who would certainly have been glad to hear from me at 7:00 on a July morning, but reached no one. We had taken an ambulance on our previous trip to an ER and, though it was competently handled by the EMT, it was preceded by some necessary (?) red tape. So I decided to try for a cab.
I dressed quickly and decided to just cover Barbara with a very light rain coat. But I found her struggling to put on a stocking. I tried to persuade her that this was not the time for stockings but she ignored me. So I put the second stocking in my pocket. And she agreed to come along.
With support, she was able to walk to the elevator and we got out of the building. We stood there for about five minutes when an unoccupied cab came by. But he did not stop. He must have wanted to avoid complications. After a few more minutes another free taxi came along and this one took the situation in and was happy to take us. He took us on a fine ride up first avenue and when we got to the entrance of S-K, he ran in and brought out a wheel chair. That was a real mensch.
By afternoon, B was in the neuro-surveillance ward where she had gone after her operation two weeks previously. As you can imagine, everything that happened that day has been burned into my memory but I won't continue in this detailed way. We saw lots of doctors, were helped by many nurses and other staff and received the usual assurances of hopeful prognoses. Sister Mimi helped out and stayed till the end of visiting hours at 8:00. I had to pack it in shortly after 7. By that time, B was trying hard to speak and did get out some sounds but neither of us could get the words.
This is being written during the course of the morning of Wednesday, July 28. B has slept most of the time but, in her waking moments, has gotten out a very few words. The homonyms are tricky of course since there is no context in which to guess their meaning. The there/their dichotomy fooled me for a while but I later thought it was really they. The mother of the patient in the next alcove is a speech therapist and has dropped in to help to help also. But it is uphill all the way.
On Tuesday, July 27, we were scheduled for our first meeting with Dr. Timothy Chan, radiation oncologist. We were to learn the proposed schedule of radiation/chemo treatments for Barbara. On the day, I woke up quite early but Barbara had gotten up before me and was in the bathroom. I asked if she were up for the day and got no response. I repeated the question - still no answer. So I proceeded with the making of coffee. When B emerged from the bathroom she headed for bed and I followed to ask her again whether she was ready for coffee. She was standing by the bed with the right side of her face convulsing periodically. The worst part was the bewildered look on her face. She could not speak. She lay down on the bed.
The literature I had read suggested that seizure victims should lie on their sides to facilitate breathing and I tried to persuade her to turn on her side without success. She whispered something but it was inaudible.
I had read that that if the seizure lasted more that five minutes, one should get emergency assistance. But the paper on which the relevant information such as the emergency number was not where it had been. I called Sloan-Kettering and, after a couple of tries, got the right number and reached a doctor whose name I did not hear. He said I should get her to the nearest ER. That is NYU for us but, as that is fairly near to S-K, we agreed that I should take her there. I called some friends who have cars who would certainly have been glad to hear from me at 7:00 on a July morning, but reached no one. We had taken an ambulance on our previous trip to an ER and, though it was competently handled by the EMT, it was preceded by some necessary (?) red tape. So I decided to try for a cab.
I dressed quickly and decided to just cover Barbara with a very light rain coat. But I found her struggling to put on a stocking. I tried to persuade her that this was not the time for stockings but she ignored me. So I put the second stocking in my pocket. And she agreed to come along.
With support, she was able to walk to the elevator and we got out of the building. We stood there for about five minutes when an unoccupied cab came by. But he did not stop. He must have wanted to avoid complications. After a few more minutes another free taxi came along and this one took the situation in and was happy to take us. He took us on a fine ride up first avenue and when we got to the entrance of S-K, he ran in and brought out a wheel chair. That was a real mensch.
By afternoon, B was in the neuro-surveillance ward where she had gone after her operation two weeks previously. As you can imagine, everything that happened that day has been burned into my memory but I won't continue in this detailed way. We saw lots of doctors, were helped by many nurses and other staff and received the usual assurances of hopeful prognoses. Sister Mimi helped out and stayed till the end of visiting hours at 8:00. I had to pack it in shortly after 7. By that time, B was trying hard to speak and did get out some sounds but neither of us could get the words.
This is being written during the course of the morning of Wednesday, July 28. B has slept most of the time but, in her waking moments, has gotten out a very few words. The homonyms are tricky of course since there is no context in which to guess their meaning. The there/their dichotomy fooled me for a while but I later thought it was really they. The mother of the patient in the next alcove is a speech therapist and has dropped in to help to help also. But it is uphill all the way.
Decisions
The doctors say that, although there is no visible sign of seizure,
Barbara still has seizures according to the EEG. They have been
adding ativan to the keppra treatment. The ativan halts the seizures
but it is a temporary thing. After a while a seizure can cause brain
damage so they now want to give her phenobarbitol. But pheno carries
a risk of stopping breathing. Even though the dosage is less than for
a grand mal, there at her age a greater risk. If breathing stops,
they normally intubate and that carries a number of risks: damage to
vocal chords, to the throat, and worse. So they wanted my permission
to give her the pheno and ultimately to intubate if necessary. I asked
them to keep her on the ativan for the whole night and not start pheno
until the morning. I felt that, if something went wrong, there would be
better care in the daytime. (I know this may be a minor consideration
but that seemed the only way I could increase her odds.)
Yesterday, Dr. Gutin confidently said that she would be back in shape very soon. Today, he supported the pheno treatment. On the other hand, he is not in the seizure loop but really a bystander who knows the players. (They have subgroups for everything there, including a swallowing team.) So I had to make a decision on the spot and basically followed the doctor's advice (after consulting Mimi).
I called Dr. Tao of the seizure group who is on tonight. She is hard to hear even when she is standing in front of you. She was talking about swallowing and so on but I did not get all of her arguments. I think it is a matter of controlling the dosages and of getting Barbara to follow the instructions for swallowing. They will follow this closely and adjust dosages as needed. As of now, B is breathing well and is talking better.
Yesterday, Dr. Gutin confidently said that she would be back in shape very soon. Today, he supported the pheno treatment. On the other hand, he is not in the seizure loop but really a bystander who knows the players. (They have subgroups for everything there, including a swallowing team.) So I had to make a decision on the spot and basically followed the doctor's advice (after consulting Mimi).
I called Dr. Tao of the seizure group who is on tonight. She is hard to hear even when she is standing in front of you. She was talking about swallowing and so on but I did not get all of her arguments. I think it is a matter of controlling the dosages and of getting Barbara to follow the instructions for swallowing. They will follow this closely and adjust dosages as needed. As of now, B is breathing well and is talking better.
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