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.
Tuesday, July 27, 2010
A seisure
The right side of her face was twitching
vigorously and she could not speak. They
have given her another antiseizure
medication and a sedative. She finally stopped
twitching but is semiconscious and cannot speak.
I reached Mimi who went to the apartment to get toothbrush and so forth --- unnecessary but it was better if she felt she was doing something. But she managed to block the toilet in a way that even I could fix but she called a plumber and is still awaiting his arrival. It's worth price.
At the moment they are hooking B up to an EKG machine and I have been ejected from her room for two hours. Fortunately, I have discovered a patients' recreation room with a computer. (My previous message was sent with the help of a helpful nurse who violated the rules.)
After a couple of hours in the ER, B was moved to the neuro-observation ward where she saw several young staff members of the neuro-oncology group that I believe is under Omuro. They were on top of things, though there were some minor matters that I was troubled about. (These little things loom large in that kind of situation.) Dr. Gutin visited her on his rounds. I had called Dr. Chan's office to leave word about what was going on but it was considered that today's situation did not concern him directly. We'll have to make a new appointment when things clear up with post stroke trauma.
B's dose of keppra was doubled and another anti- seizure medication was tossed in. She did a lot of sleeping during the day. The medics do not understand the process well and do not even seem to try to. But what I could imagine from what they were telling me is that neurons start to produce action potentials synchronously and, if there are enough of them involved, a macroscopic part of the body goes into an oscillatory mode. That feature of the process, the observable seizure, has now ceased in Barbara's case. But there are still some residual high frequency electric modes with amplitudes below the threshold for an action potential, so there is no visible seizure. But as long as those modes are there, there is still a risk that they can exceed criticality. So they have kept her there to see what can be done about it.
An article on seizures from The American Brain Tumor Association
I reached Mimi who went to the apartment to get toothbrush and so forth --- unnecessary but it was better if she felt she was doing something. But she managed to block the toilet in a way that even I could fix but she called a plumber and is still awaiting his arrival. It's worth price.
At the moment they are hooking B up to an EKG machine and I have been ejected from her room for two hours. Fortunately, I have discovered a patients' recreation room with a computer. (My previous message was sent with the help of a helpful nurse who violated the rules.)
After a couple of hours in the ER, B was moved to the neuro-observation ward where she saw several young staff members of the neuro-oncology group that I believe is under Omuro. They were on top of things, though there were some minor matters that I was troubled about. (These little things loom large in that kind of situation.) Dr. Gutin visited her on his rounds. I had called Dr. Chan's office to leave word about what was going on but it was considered that today's situation did not concern him directly. We'll have to make a new appointment when things clear up with post stroke trauma.
B's dose of keppra was doubled and another anti- seizure medication was tossed in. She did a lot of sleeping during the day. The medics do not understand the process well and do not even seem to try to. But what I could imagine from what they were telling me is that neurons start to produce action potentials synchronously and, if there are enough of them involved, a macroscopic part of the body goes into an oscillatory mode. That feature of the process, the observable seizure, has now ceased in Barbara's case. But there are still some residual high frequency electric modes with amplitudes below the threshold for an action potential, so there is no visible seizure. But as long as those modes are there, there is still a risk that they can exceed criticality. So they have kept her there to see what can be done about it.
An article on seizures from The American Brain Tumor Association
Monday, July 26, 2010
Questions for the oncoradiologist
I have tried to check on the oncoradiologist that you are seeing tomorrow - Timothy Chan. I have not found much, but what I have found is good. He is an MD-PhD, which
bodes well for being able to communicate with him as a scientist. In
my experience, the MD-PhD students are by far the smartest ones among
the medical students. Also, he is involved in research. Most of his
published work is in genetics/molecular approaches, so he might be
a good source of advice on eventual clinical trials. His specialty
as a radiation oncologist is precisely in the area of anaplastic
astrocytomas (grade III astrocytomas). He was trained at
Johns Hopkins (medical school, residency, fellowship), which is one
of the few top cancer centers in the USA, as Sloan-Kettering is.
Ask the doctor as much as possible about the procedure. Ask him to tell him in detail what will be done and what he expects to learn from it. Also ask him about what could go wrong, and about recovery from it even if all goes right.
It seems to me that an important question is that of what is it that the proposed treatment will achieve: control the rate of growth, an actual reduction in size? Will it alleviate any symptoms, or delay the onset of new ones? Is it the goal to make the tumor operable?
There are side effects associated with radiation/chemotherapy, so it seems to me that it is important to understand why the treatments are being pursued. It is not the doctors that will have to endure the discomforts, so make sure that there is a good reason for going through with it.
Love - Sara
Ask the doctor as much as possible about the procedure. Ask him to tell him in detail what will be done and what he expects to learn from it. Also ask him about what could go wrong, and about recovery from it even if all goes right.
It seems to me that an important question is that of what is it that the proposed treatment will achieve: control the rate of growth, an actual reduction in size? Will it alleviate any symptoms, or delay the onset of new ones? Is it the goal to make the tumor operable?
There are side effects associated with radiation/chemotherapy, so it seems to me that it is important to understand why the treatments are being pursued. It is not the doctors that will have to endure the discomforts, so make sure that there is a good reason for going through with it.
Love - Sara
Sunday, July 25, 2010
Tylenol helps
Since our Day uptown, we have been lying low waiting to carry out our next assignment. Barbara has remained completely fatigued and spends most of the time dozing in the bed in an alcove in the small room that she regards as hers. Its door is about ten feet from the door of the big bedroom where I have been sleeping on my own.
This morning, when I got up and went to see how B was doing I found her standing there looking forlorn and almost in tears. She said that her head hurt where the operation had taken place. When asked what the pain was like, she said it felt heavy. With my usual sang froid I dug out the instructions that she was given when she was discharged from MSKCC. As instructed, I gave her 650mg of Tylenol. Then I called S-K and asked for the doctor covering for Dr. Gutin. By the time he returned my call, some twenty minutes later, B's pain had diminished. The doctor said that such pains were normal and told me what signs to watch for that would require his attention.
Mimi (Barbara's sister) came by with lunch and I asked her to stay on while I went out to run some errands. Later in the afternoon, B confessed that the pain had returned and that another dose of the Tylenol had cured the problem. I urged her to keep me better informed but who knows whether she'll listen.
Ed
Saturday, July 24, 2010
Enema can't do no harm
[Predrag: here is some perspective on things offered by a wise man whose identity I am not at liberty to reveal]
Conventional medics are very negative about treatments that have not been thoroughly tested out clinically.
It reminds me of the story about Maury Schwarz, a star of the Yiddish theater. Just before a scheduled performance, the theater manager came out and, with tears in his eyes and in a sobbing voice, announced that there would be no show that night --- Maury Schwarz was just found dead in his dressing room.
A great outcry was raised in the theatre. But a little old lady remained calm and struggled to the front of the theater through the wailing crowd, waved a supplicating hand and called out, 'Mister, Mister! Did you give him an enema?' The guy did not hear her or did not listen. So she called out again ... etc. etc. ... till the mgr. finally said 'Lady, he's dead. It can't do no good.'
'Can't do no harm' said the little old lady.
Conventional medics are very negative about treatments that have not been thoroughly tested out clinically.
It reminds me of the story about Maury Schwarz, a star of the Yiddish theater. Just before a scheduled performance, the theater manager came out and, with tears in his eyes and in a sobbing voice, announced that there would be no show that night --- Maury Schwarz was just found dead in his dressing room.
A great outcry was raised in the theatre. But a little old lady remained calm and struggled to the front of the theater through the wailing crowd, waved a supplicating hand and called out, 'Mister, Mister! Did you give him an enema?' The guy did not hear her or did not listen. So she called out again ... etc. etc. ... till the mgr. finally said 'Lady, he's dead. It can't do no good.'
'Can't do no harm' said the little old lady.
Wednesday, July 21, 2010
Staples removed
We are just back from having the staples removed by Dr. Gutin's nurse.
She was urging B to give Dr. O a chance as he is very good and she and
Dr. G. have utmost confidence in him. Barbara seemed to go along with
that. The neuro-oncolgist that we dealt with at NYU is Deborah Gruber who
seems to be pretty good also. Our choosing Sloan-Kettering over NYU was
in fact based on the relative experience of the surgeons but we are now
done with the surgeons, and are in the treatment regime. I think trying to
go to Columbia up at 168th St.for treatment would be too much of a strain
on Barbara who is and will be feeling poorly.
A central figure now is likely to be the radiation oncologist --- Timothy
Chan ---whom we'll see next Tuesday. I suppose it would be best to wait
till then before making any attempt to change things. There is no guarantee
that we could improve the situation that way. And, by all accounts, we are
in the good place with one of their top guys.
We'll just try to relax these next few days and await what is next while I try
to read a bit more.
She was urging B to give Dr. O a chance as he is very good and she and
Dr. G. have utmost confidence in him. Barbara seemed to go along with
that. The neuro-oncolgist that we dealt with at NYU is Deborah Gruber who
seems to be pretty good also. Our choosing Sloan-Kettering over NYU was
in fact based on the relative experience of the surgeons but we are now
done with the surgeons, and are in the treatment regime. I think trying to
go to Columbia up at 168th St.for treatment would be too much of a strain
on Barbara who is and will be feeling poorly.
A central figure now is likely to be the radiation oncologist --- Timothy
Chan ---whom we'll see next Tuesday. I suppose it would be best to wait
till then before making any attempt to change things. There is no guarantee
that we could improve the situation that way. And, by all accounts, we are
in the good place with one of their top guys.
We'll just try to relax these next few days and await what is next while I try
to read a bit more.
Tuesday, July 20, 2010
Surgeons
This guy dies and goes to heaven. As he is passing through the Gate he sees I stately bearded figure with a stethoscope draped around his neck. Gosh, he says to St. Peter, do need doctors here?
No, no says the Saint. That is G_d. He thinks he's a surgeon.
Some not-as good as Ed's jokes
No, no says the Saint. That is G_d. He thinks he's a surgeon.
Some not-as good as Ed's jokes
Waiting
We are now at the 53rd St. branch of Sloan-Kettering. Our instruction sheet has us down for a noon appointment with Dr. Gutin. But here, there is no record of this and he is not in the building. We are being sent to his 67th St. lair after we see Dr. Omuro for our 2:30 appointment.
This is the second time we have been given a wrong or nonexistent appointment with Dr. Gutin. He must have an airhead in his staff.
Support site at www.cancercompass.com
Sara writes:
I found a support site at www.cancercompass.com, where people with brain cancer or their relatives post comments about their experiences with various hospitals, doctors, clinical trials, chemotherapy drugs, etc. I opened an account for myself, and I posted the following question: Have you had any experience with Dr. Omuro at Sloan-Kettering? Did you have radiation treatments at his group? Where you satisfied with the care you received? This was only two hours ago, and the first comment is in - `Beth' says: I do not know Dr. Omuro. My husband was treated by Dr. Gavilovic who I love. He was the kindest, smartest, warmest.... I could go on and on. He supported my family. He gave so much time and had an amazing outlook about this horrible disease. I hope your doctor is as amazing. So, I did some research and I found a Dr. Igor Gavrilovic who is a neurologist at Sloan-Kettering. I do not know if you came across his name. He is also part of the Brain Tumor Center at Sloan-Kettering, and he coordinates the multidisciplinary management team consisting of neurosurgeons and radiation oncologists. He also participates in clinical trials, with focus on novel biological and molecular treatments. If you stay at Sloan-Kettering, his might be a name to keep in mind. If anyone comments on Dr. Omuro, I will let you know.
I found a support site at www.cancercompass.com, where people with brain cancer or their relatives post comments about their experiences with various hospitals, doctors, clinical trials, chemotherapy drugs, etc. I opened an account for myself, and I posted the following question: Have you had any experience with Dr. Omuro at Sloan-Kettering? Did you have radiation treatments at his group? Where you satisfied with the care you received? This was only two hours ago, and the first comment is in - `Beth' says: I do not know Dr. Omuro. My husband was treated by Dr. Gavilovic who I love. He was the kindest, smartest, warmest.... I could go on and on. He supported my family. He gave so much time and had an amazing outlook about this horrible disease. I hope your doctor is as amazing. So, I did some research and I found a Dr. Igor Gavrilovic who is a neurologist at Sloan-Kettering. I do not know if you came across his name. He is also part of the Brain Tumor Center at Sloan-Kettering, and he coordinates the multidisciplinary management team consisting of neurosurgeons and radiation oncologists. He also participates in clinical trials, with focus on novel biological and molecular treatments. If you stay at Sloan-Kettering, his might be a name to keep in mind. If anyone comments on Dr. Omuro, I will let you know.
A Day at the Sloan-Kettering Hospital
Barbara was released from the Sloan-Kettering hospital on July 13th following her exploratory brain operation. She was given sheets containing hard-to-read instructions for taking her medications and some printed further information. Included in this were appointments with her surgeon, Dr. Gutin, (12:00 at the 53rd St. Campus of S-K) and with the oncologist, Dr. Omuro, (2:30 at 53rd St.), both on July 20.
We arrived on that day at 11:45. The receptionist had us down for a 2:30 with Dr. O. but no record of an appointment with Dr. G. She called Dr. G.'s office at the 67th St. campus and were told to come to 67th St. after we had seen Dr. O. When we were finished with those appointments it was nearly 5:00 and a call to Dr. G.'s office revealed that he was out of town and that, in any case, it was too late to accomplish our main purpose in seeing him, which was to have the staples removed from B's head. Were told to come back the next day. Fortunately, the waiting room at 53rd St. stocked small cans of juice and pretzels to keep us going while we awaited our oncological experience. That began shortly before 2:00 with the checking of vital signs. (B had already filled out some pages of forms with information, most of which is undoubtedly in the S-K computers.)
Then in a pleasant examination room we saw a series of people of whom I can mention only a few. Dr. Nayak (I am not sure of the spelling since she mentioned only her fi rst name and the papers with her full name on it are on some prescription forms that are no longer with us) came and examined B, checking the usual things that might reveal the state of her brain. (She was accompanied by a trainee from Paris where Dr. O. has some connection.) She explained that B has a tumor that is mostly grade 2 but with an admixture of grade 3. (On July 8, after the first look at the tissue from the biopsy, Dr. G. had already said that she has a glioma of grade 3. In a later discussion he mentioned that it is an astrocytoma, that is, a particular kind of glioma.) Dr. N. said that they would treat this tumor like a grade 3, in any case. As the literature we were given encourages the asking of questions, I asked how one distinguished grade 3 from grade 2. `Mitosis' she replied. When I tried to probe further, she told me what mitosis is. Dr. N. explained that the course of treatment would include radiation and chemotherapy. The chemo comes in pills nowadays and the one intended for the first treatments is a standard one for these cases. She also detailed the horrors of the possible side effects of the treatments. Although B has been bad shape till now, she hasn't seen anything yet, it appears. I also asked what kind of radiation would be used and was told that it would be concentrated radiation. I pressed a bit for more details and was told to ask the radiologist.
We were then left on our own for a time. In a little while, a nurse came in with prescriptions for the medication to accompany the radiation therapy. He kept expressing the dosages in meters2. He said the figures were based on the height and weight of the patient. I asked why one used units of area for medical dosages but got the usual kind of look that my questions usually produce in such places. I said there was no doubt a formula for this quantity and he agreed. But when I asked to see the formula he stonewalled me. I guess that it is easy enough to make one up if we assume most people have about the same density but I wanted to see if I could figure out why they use areal units. A bit later, Dr. O. came in and introduced himself. He was accompanied by Dr. N. He told us that B has a glioma of grade 3 with an admixture of grade 4. (He used some other word than admixture.) When I mentioned that Dr. N. had said grade 2 was the predominant character of B's tumor he explained that it was probably because the tumor is heterogeneous and that the tissue from the biopsy must have been predominantly grade 2. Dr. O.'s manner did not encourage questions so I did not ask how that jibed with Dr. G.'s assessing the tumor at grade 3 from the same tissue. He too went into the nature of the treatment and the nasty side e ffects that might arise. I asked what kind of radiation would be used. `Photons,' he explained. I suspect that my response seemed incoherent. (Actually, I gather from reading that they grade the tumors on the degree of abnormality of its cells.)
Other people came and went in the course of our three hours in the examining room including, at the end, a doctor whose name I did not get. She seemed to know something and when asked a question she could not answer said she did not know such things. A refreshing conclusion to a frustrating afternoon. We are to go in for staple removal tomorrow (July 21). Today was the second time we have been given a wrong appointment time, so I am not sure what to expect, though I now know enough to call ahead.
I (EAS) am sorry that I made this such a dull story but my memory for detail has been damaged by the events of the past (nearly) three months. And I apologize for mass producing this message but writing an individual response to each inquiry over the past 3- months has sapped my strength.
We arrived on that day at 11:45. The receptionist had us down for a 2:30 with Dr. O. but no record of an appointment with Dr. G. She called Dr. G.'s office at the 67th St. campus and were told to come to 67th St. after we had seen Dr. O. When we were finished with those appointments it was nearly 5:00 and a call to Dr. G.'s office revealed that he was out of town and that, in any case, it was too late to accomplish our main purpose in seeing him, which was to have the staples removed from B's head. Were told to come back the next day. Fortunately, the waiting room at 53rd St. stocked small cans of juice and pretzels to keep us going while we awaited our oncological experience. That began shortly before 2:00 with the checking of vital signs. (B had already filled out some pages of forms with information, most of which is undoubtedly in the S-K computers.)
Then in a pleasant examination room we saw a series of people of whom I can mention only a few. Dr. Nayak (I am not sure of the spelling since she mentioned only her fi rst name and the papers with her full name on it are on some prescription forms that are no longer with us) came and examined B, checking the usual things that might reveal the state of her brain. (She was accompanied by a trainee from Paris where Dr. O. has some connection.) She explained that B has a tumor that is mostly grade 2 but with an admixture of grade 3. (On July 8, after the first look at the tissue from the biopsy, Dr. G. had already said that she has a glioma of grade 3. In a later discussion he mentioned that it is an astrocytoma, that is, a particular kind of glioma.) Dr. N. said that they would treat this tumor like a grade 3, in any case. As the literature we were given encourages the asking of questions, I asked how one distinguished grade 3 from grade 2. `Mitosis' she replied. When I tried to probe further, she told me what mitosis is. Dr. N. explained that the course of treatment would include radiation and chemotherapy. The chemo comes in pills nowadays and the one intended for the first treatments is a standard one for these cases. She also detailed the horrors of the possible side effects of the treatments. Although B has been bad shape till now, she hasn't seen anything yet, it appears. I also asked what kind of radiation would be used and was told that it would be concentrated radiation. I pressed a bit for more details and was told to ask the radiologist.
We were then left on our own for a time. In a little while, a nurse came in with prescriptions for the medication to accompany the radiation therapy. He kept expressing the dosages in meters2. He said the figures were based on the height and weight of the patient. I asked why one used units of area for medical dosages but got the usual kind of look that my questions usually produce in such places. I said there was no doubt a formula for this quantity and he agreed. But when I asked to see the formula he stonewalled me. I guess that it is easy enough to make one up if we assume most people have about the same density but I wanted to see if I could figure out why they use areal units. A bit later, Dr. O. came in and introduced himself. He was accompanied by Dr. N. He told us that B has a glioma of grade 3 with an admixture of grade 4. (He used some other word than admixture.) When I mentioned that Dr. N. had said grade 2 was the predominant character of B's tumor he explained that it was probably because the tumor is heterogeneous and that the tissue from the biopsy must have been predominantly grade 2. Dr. O.'s manner did not encourage questions so I did not ask how that jibed with Dr. G.'s assessing the tumor at grade 3 from the same tissue. He too went into the nature of the treatment and the nasty side e ffects that might arise. I asked what kind of radiation would be used. `Photons,' he explained. I suspect that my response seemed incoherent. (Actually, I gather from reading that they grade the tumors on the degree of abnormality of its cells.)
Other people came and went in the course of our three hours in the examining room including, at the end, a doctor whose name I did not get. She seemed to know something and when asked a question she could not answer said she did not know such things. A refreshing conclusion to a frustrating afternoon. We are to go in for staple removal tomorrow (July 21). Today was the second time we have been given a wrong appointment time, so I am not sure what to expect, though I now know enough to call ahead.
I (EAS) am sorry that I made this such a dull story but my memory for detail has been damaged by the events of the past (nearly) three months. And I apologize for mass producing this message but writing an individual response to each inquiry over the past 3- months has sapped my strength.
Saturday, July 17, 2010
B sleeps almost all the time
The situation has not changed much --- B sleeps almost all the time
but gets up for meals. I get her to go out for an occasional short
walk also, but it is very hot out there.
I think I'll wait till we see the doctors on Tuesday. This may put a new complexion on things
I think I'll wait till we see the doctors on Tuesday. This may put a new complexion on things
Monday, July 12, 2010
Diagnosis: Astrocytoma grade 3 or 4
[Predrag's notes from exchanges with Ed]
Dr. Gutin has classified Barbara's tumor as grade 3. Dr. Omuro called it a 4. When Ed asked why there was a difference, Dr. Omuro said that the tumor is heterogeneous and there were bits of 4 in there. He added that they usually treat such tumors as 4s for patients of Barbara's age.
[Ed writes:]
We are in Sloan-Kettering recovering from exploratory brain surgery which has revealed a grade 3 astrocytoma. B. is sleeping much of the time but they are threatening to let her out soon. Then the practical problems start. Her equilibrium is not so good but she does not recognize it, so I won't be able to leave her alone for a while. Her sister has a lung infection and should stay away. So this will be complicated. I am just the man to deal with this.
Treatment is to be here in S-K so no Cape Cod this summer.
The weather continues fine.
Dr. Gutin has classified Barbara's tumor as grade 3. Dr. Omuro called it a 4. When Ed asked why there was a difference, Dr. Omuro said that the tumor is heterogeneous and there were bits of 4 in there. He added that they usually treat such tumors as 4s for patients of Barbara's age.
[Ed writes:]
We are in Sloan-Kettering recovering from exploratory brain surgery which has revealed a grade 3 astrocytoma. B. is sleeping much of the time but they are threatening to let her out soon. Then the practical problems start. Her equilibrium is not so good but she does not recognize it, so I won't be able to leave her alone for a while. Her sister has a lung infection and should stay away. So this will be complicated. I am just the man to deal with this.
Treatment is to be here in S-K so no Cape Cod this summer.
The weather continues fine.
Saturday, July 10, 2010
Brain tumors: Astrocytomas
Sara: I do not have any oncology
expertise, but I have talked to a few experts and done some reading. My notes
might help Barbara's friends understand better the tumor.
Brain tumors almost always involve the glia. These are non-neuronal brain cells. These cells surround neurons (in a one to one ratio overall, and 3 to 2 ratio in gray matter) and hold them in place, providing support and protection. They also supply nutrients and oxygen, form myelin for insulation, and destroy pathogens.
Most of the glial cells are astrocytes (or astroglia), star-shaped cells. They anchor neurons to their blood supply and regulate the extracellular chemical environment (remove excess ions, recycle neurotrasnsmitters).
Astrocytomas are the most common form of glioma (brain tumor involving the glia). They can occur in most parts of the brain, but are most commonly found in the cerebrum, and they are more common in adults than in young people. A grade 3 astrocytoma is also called 'anaplastic astrocytoma'. The grade is an indication of how rapidly the tumor is growing. They look at how many cells are actually dividing and whether there are new blood vessels; both of these are indicators of tumor growth. There might be necrosis (dead tissue), an indication that the tumor is outgrowing its blood supply.
There are three standard types of treatment for high-grade gliomas: surgery, radiation therapy, and chemotherapy. Because grade 3 and 4 tumors have a tendency to grow rapidly, treatment must be started soon after surgery, as soon as the surgical incision has healed (usually 2 to 4 weeks after surgery). These therapies are helpful, but they do not cure high grade gliomas: the tumor cells infiltrate into surrounding brain and most glioma cells are partially resistant to radiation and chemotherapy.
High-grade glioma cells almost always start to grow again at some point in time. The treatment aims at delaying this regrowth as long as possible. Regrowth does not necessarily imply loss of control of the tumor, but it does mean that a new series of treatments should be considered.
Whether surgery is possible depends on the location of the tumor. There are areas where surgery is too risky. When a tumor is located in a sensitive area of the brain, the neurosurgeon will perform a biopsy with a small needle, to avoid damage to brain function.
Radiation treatments are the standard. The traditional form is called `fractionated radiation' - the delivefy is in small doses, or fractions. The doses are given five days a week, Monday through Friday, for 4 to 6 weeks. Each treatment takes only a few minutes, and there are no immediate side effects during each treatment. As the treatment progresses, there will be hair loss in the area where the radiation beam passes into the tumor. Most patients experience fatigue by the second or third week; a 30 minute nap every afternoon is helpful. Long-term effects of the radiotion therapy depend on the dosage; it is best to discuss this with the radiation oncologist.
This type of radiation is called `external beam radiation': the radiation is delivered from outside the body. It allows for a wider area to be treated. There is a more precise type of radiation therapy called `fractionalized stereotactic radiotehrapy', which minimizes damage to healthy tissue. Ask the radiation oncologist which approach he recommends and why.
Most patients feel better during radiation therapy if they take a small dose of a steroid which reduces brain swelling (Decadron, also called dexamethasone). This drug has many side effects, but these are usually less important that the benefit from taking it; it is important to find the smallest dose that is helpful.
Chemotherapy might not be necessary as a reinforcement to radiation; the doctors might decide not to use it now, but it might be necessary later on, as the tumor regrows.
Brain tumors almost always involve the glia. These are non-neuronal brain cells. These cells surround neurons (in a one to one ratio overall, and 3 to 2 ratio in gray matter) and hold them in place, providing support and protection. They also supply nutrients and oxygen, form myelin for insulation, and destroy pathogens.
Most of the glial cells are astrocytes (or astroglia), star-shaped cells. They anchor neurons to their blood supply and regulate the extracellular chemical environment (remove excess ions, recycle neurotrasnsmitters).
Astrocytomas are the most common form of glioma (brain tumor involving the glia). They can occur in most parts of the brain, but are most commonly found in the cerebrum, and they are more common in adults than in young people. A grade 3 astrocytoma is also called 'anaplastic astrocytoma'. The grade is an indication of how rapidly the tumor is growing. They look at how many cells are actually dividing and whether there are new blood vessels; both of these are indicators of tumor growth. There might be necrosis (dead tissue), an indication that the tumor is outgrowing its blood supply.
There are three standard types of treatment for high-grade gliomas: surgery, radiation therapy, and chemotherapy. Because grade 3 and 4 tumors have a tendency to grow rapidly, treatment must be started soon after surgery, as soon as the surgical incision has healed (usually 2 to 4 weeks after surgery). These therapies are helpful, but they do not cure high grade gliomas: the tumor cells infiltrate into surrounding brain and most glioma cells are partially resistant to radiation and chemotherapy.
High-grade glioma cells almost always start to grow again at some point in time. The treatment aims at delaying this regrowth as long as possible. Regrowth does not necessarily imply loss of control of the tumor, but it does mean that a new series of treatments should be considered.
Whether surgery is possible depends on the location of the tumor. There are areas where surgery is too risky. When a tumor is located in a sensitive area of the brain, the neurosurgeon will perform a biopsy with a small needle, to avoid damage to brain function.
Radiation treatments are the standard. The traditional form is called `fractionated radiation' - the delivefy is in small doses, or fractions. The doses are given five days a week, Monday through Friday, for 4 to 6 weeks. Each treatment takes only a few minutes, and there are no immediate side effects during each treatment. As the treatment progresses, there will be hair loss in the area where the radiation beam passes into the tumor. Most patients experience fatigue by the second or third week; a 30 minute nap every afternoon is helpful. Long-term effects of the radiotion therapy depend on the dosage; it is best to discuss this with the radiation oncologist.
This type of radiation is called `external beam radiation': the radiation is delivered from outside the body. It allows for a wider area to be treated. There is a more precise type of radiation therapy called `fractionalized stereotactic radiotehrapy', which minimizes damage to healthy tissue. Ask the radiation oncologist which approach he recommends and why.
Most patients feel better during radiation therapy if they take a small dose of a steroid which reduces brain swelling (Decadron, also called dexamethasone). This drug has many side effects, but these are usually less important that the benefit from taking it; it is important to find the smallest dose that is helpful.
Chemotherapy might not be necessary as a reinforcement to radiation; the doctors might decide not to use it now, but it might be necessary later on, as the tumor regrows.
Wednesday, July 7, 2010
48th anniversary
Today, on our 48th anniversary, I had an accident with our
espresso machine and scalded my wrist. I learned that it was a second
degree burn. It is healing slowly.
The weather continues fine.
Thursday, July 1, 2010
Diagnosis
Both the NYU neuro-oncologist and the head of brain
surgery at Sloan-Kettering concur that Barbara has a
brain tumor. They both feel that a biopsy is needed and
pretty soon at that, as the object is beginning to be active.
We have to decide whether that should be done by a bright
young surgeon at NYU or the head of brain surgery at S-K.
Unfortunately I missed part of the phone conversation B.
had with the NYU doctor but got the impression that they
wanted to get a piece of the object at NYU. B. does not
remember very well what was said, so I am not so sure
this is correct.
The S-K guy said that he felt this was a delicate region and would simply open up a hole and look in with a microscope. Barbara does not remember this either so it can be taken as certain, though I am pretty sure this is what he said.
Barbara has decided to go with the Sloan-Kettering doctor and that she is waiting to hear about scheduling.
The S-K guy said that he felt this was a delicate region and would simply open up a hole and look in with a microscope. Barbara does not remember this either so it can be taken as certain, though I am pretty sure this is what he said.
Barbara has decided to go with the Sloan-Kettering doctor and that she is waiting to hear about scheduling.
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