Andreas:
I am back in New York and should help out as much as possible with Ed
and Barbara. I see that it is one of my main job to make sure Ed is OK
at least until I graduate....
I promised Ed
that I would conspire with you to try to help out.
Anything I can do, anyone else I should contact?
Predrag:
I do not have anything concrete at the moment. Ed's main practical problem
is that he is afraid to leave Barbara alone, and Barbara is not in a mood for
having people other than Ed and Mimi around the house, because effort of
being hospitable tires her even more. However, various friends have been in
the apartment for brief periods of time - if Ed feels it is OK.
I have not talked to him since the treatment
started, but in the coming 6 weeks
she will be weaker, more fatigued and sleep even more. So if I were there
(both Antonello and I plan to be there mid October, but not before) I would
call him daily (please speak veeeeery clearly), and ask whether there is some errand or whatever you
could do.
Ed says there is no good time to call him, but radiation is in the mornings, about 2:30 pm is the least bad time. Jitterbug has a loudspeaker, so 646 438 4448 is bit easier on him
than the home phone.
There are tons of practical things to do, and Léa in particular has
been very helpful - she (or some other New York people) might delegate some task to you.
Monday, August 30, 2010
Cannabinoid clinical studies - 1975 to 2009
Arno Hazekamp and Franjo Grotenhermen, "Cannabinoid medicines,
Review on clinical studies with cannabis and cannabinoids 2005-2009".
M. Ben Amar, "Cannabinoids in medicine: A review of their therapeutic potential" J. Ethnopharm. 105, 1-25 (2006) reviews the clinical trials performed in the period 1975 to June 2005.
Talked to Marty McDonald, a sharp psychologist who works as psychotherapist with geriatric vets at the Atlanta VA hospital. She says that VA has just approved medical use of cannabinoids. They are used to relieve nausea and improve appetite. She says they have no known curative effect for cancers.
And here is a 420 Magazine that offers some resources, if Ed decides to go down the cannabinoid path, and a recent testimony on clinical applications for cannabinoids.
M. Ben Amar, "Cannabinoids in medicine: A review of their therapeutic potential" J. Ethnopharm. 105, 1-25 (2006) reviews the clinical trials performed in the period 1975 to June 2005.
Talked to Marty McDonald, a sharp psychologist who works as psychotherapist with geriatric vets at the Atlanta VA hospital. She says that VA has just approved medical use of cannabinoids. They are used to relieve nausea and improve appetite. She says they have no known curative effect for cancers.
And here is a 420 Magazine that offers some resources, if Ed decides to go down the cannabinoid path, and a recent testimony on clinical applications for cannabinoids.
Saturday, August 28, 2010
Medical schedule
[posted by Predrag, notes from a phone conversation with Ed, sorry if garbled]
Sunday August 29
- The chemo starts Sunday night and goes for 42 nights. The radiation is weekdays only for six weeks (until October 8?). A friend is organizing with insurance company an ambulette to pick them up, take them back.
- Another friend is exploring possibility of hiring a nursing student from NYU to help a bit - currently Ed (or Mimi) is with Barbara at all times.
- Went to S-K; they tested the head mask alignment in preparation for the treatments that start on Monday.
- Barbara and Ed are going on their daily walks. She has difficulties with speech and also sometime gets confused with practical daily things. Speech therapist expects her speech to improve.
Wednesday August 18 went to oncological ophthalmologist
- The issue is that the tumor is close to the optical nerve. It is already impacting Barbara's left eye. What are the risk of radiation this close to the nerve?
- He found that the acuity of the left eye and its color sensitivity were noticeably less than those of the right. He could not say whether this was from the operation or the tumor's breaking of small blood vessels. (as revealed by the leaking into the surroundings of the gadolinium used for the MRIs). Whether the treatment would make the visual problem better or worse, he could not say. He was familiar with use of TTF for eyes. It has gone out of favor in that case because the electric fields are unpredictable and can cause burns. His experience is limited to eyes and he had no information about the case of brains.
- Oncologist said that S-K had previously participated in the GBM clinical trial, but they pulled out because the "did not think well of it." One problem is that the head has to be shaved and patients have to lug a large heavy gadget with them.
- Ed is pondering. A contact to manager of the trials at Cornell implied that the backing of MSKCC would be required, or that someone at Cornell would somehow be involved in monitoring the standard treatment. Alternatively, B could move over to Cornell for the standard treatment, but that would not be wise at this stage.
- If one is to pursue the Cannabinoids, TTF is out as far as a trial is concerned since only one treatment can be run.
- Oncologist said that if Barbara takes 2 walks every day, Ed can stop giving he anticoagulant injections. She is weak, but Ed will try to get her walking.
Saturday August 15, went for an MRI.
Sunday, August 22, 2010
Cannabinoids
In a magazine article, I encountered a report on the medical use
of certain extracts of cannabis (cannabinoids) that promote apoptosis
(cell suicide) in certain tumor cells such as those occurring in the brain.
This, at least, happens in vitro and also in lab animals.
The clinical evidence is marginal but seems encouraging.
Here is the abstract of a good review
The doctors we have been talking to do not seem ready to try this on Barbara but, even if they could, it would be illegal in New York State. However, the medical use of these extracts is legal in New Jersey where MSKCC does have an outpost. There does seem to be a problem with getting these products even in NJ, but I presume that this will be solved.
Engelbert's son Michael tells me that there are now synthetic versions of cannabis that reach the same receptors as the natural stuff. Several of these are legal. Is this a reasonable thing to try? I must learn more.
Sara adds: this review also seems interesting. It is from 2003, does not seems to have been followed up.
Predrag adds: I have been skeptical about cannabinoids, as I have so far found only one clinical trial (Guzmán, Madrid 2006 with no follow-up clinical trials), and Barbara needs a full-fledged clinical trail very soon, accepted by her doctors, and coordinated with the planned radiation/chemo combo. Pot is controversial, and websites have to be sifted with care. Wiki says "the mechanisms which promote THC's tumor cell–killing action are unknown." In US there do not seem to be major ongoing efforts in this direction; I found Sean D. McAllister in San Francisco. There's no sign yet that the approach works in laboratory animals, let alone people. Dr. Paul Graham Fisher, chief of the Division of Child Neurology at Stanford University and Lucile Packard Children's Hospital says "you're seeing a lot more thinking outside the box about trying to treat glioblastoma. I think in the next 10 to 15 years we're going to start seeing progress forward." For now, he says, there's no evidence that marijuana is good or bad for glioblastoma tumors (HealthDay News - Monday, January 11 2010). Georgetown Lombardi Cancer Center is currently only preparing a clinical trial. Maybe US government is conspiring to prevent a cure for cancer, but I doubt it. The review that Sara cites has 268 Google Scholar cites, and some of that reading is interesting.
this article (not public access, need to get it thorough GaTech Library):
Predrag to Ed: How about trying to pull your Columbia professor rank, calling up the authors of the Columbia University clinical trial (2007) "showing that HIV/AIDS patients who inhaled cannabis four times daily experienced substantial increases in food intake with little evidence of discomfort and no impairment of cognitive performance." Not the problem at hand, but they should know what clinical trials are in progress? The director of these studies is Margaret Haney, try calling her? Please please introduce yourself as the Columbia Ratherferd Chair Professor in Astronomy, and not as Ed, medical people respect hierarchy.
Even it it does not slow down the tumor, it might be a palliative, and that cannot hurt.
Cannabinoids as potential new therapy for the treatment of gliomasThe idea is clear from the abstract. The materials come in the form of pills and sprays for use in the mouth. They appear to be helpful and seem to have no negative side effects.
Expert Rev. Neurotherapeutics 8(1), 37-49 (2008)
Daniela Parolaro and Paola Massi
Via A da Giussano 10, Busto Arsizio (VA), Italy
Tel.: +39 033 133 9417 Fax: +39 033 133 9459 daniela.parolaro@uninsubria.
Gliomas constitute the most frequent and malignant primary brain tumors. Current standard therapeutic strategies (surgery, radiotherapy and chemotherapeutics, e.g., temozolomide, carmustin or carboplatin) for their treatment are only palliative and survival diagnosis is normally 6-12 months. The development of new therapeutic strategies for the management of gliomas is therefore essential. Interestingly, cannabinoids have been shown to exert antiproliferative effects on a wide spectrum of cells in culture. Of interest, cannabinoids have displayed a great potency in reducing glioma tumor growth either in vitro or in animal experimental models, curbing the growth of xenografts generated by subcutaneous or intratecal injection of glioma cells in immune-deficient mice. Moreover, cannabinoids appear to be selective antitumoral agents as they kill glioma cells without affecting the viability of nontransformed counterparts. A pilot clinical trial on patients with glioblastoma multiforme demonstrated their good safety profile together and remarkable antitumor effects, and may set the basis for further studies aimed at better evaluating the potential anticancer activity of cannabinoids.
The doctors we have been talking to do not seem ready to try this on Barbara but, even if they could, it would be illegal in New York State. However, the medical use of these extracts is legal in New Jersey where MSKCC does have an outpost. There does seem to be a problem with getting these products even in NJ, but I presume that this will be solved.
Engelbert's son Michael tells me that there are now synthetic versions of cannabis that reach the same receptors as the natural stuff. Several of these are legal. Is this a reasonable thing to try? I must learn more.
Sara adds: this review also seems interesting. It is from 2003, does not seems to have been followed up.
Predrag adds: I have been skeptical about cannabinoids, as I have so far found only one clinical trial (Guzmán, Madrid 2006 with no follow-up clinical trials), and Barbara needs a full-fledged clinical trail very soon, accepted by her doctors, and coordinated with the planned radiation/chemo combo. Pot is controversial, and websites have to be sifted with care. Wiki says "the mechanisms which promote THC's tumor cell–killing action are unknown." In US there do not seem to be major ongoing efforts in this direction; I found Sean D. McAllister in San Francisco. There's no sign yet that the approach works in laboratory animals, let alone people. Dr. Paul Graham Fisher, chief of the Division of Child Neurology at Stanford University and Lucile Packard Children's Hospital says "you're seeing a lot more thinking outside the box about trying to treat glioblastoma. I think in the next 10 to 15 years we're going to start seeing progress forward." For now, he says, there's no evidence that marijuana is good or bad for glioblastoma tumors (HealthDay News - Monday, January 11 2010). Georgetown Lombardi Cancer Center is currently only preparing a clinical trial. Maybe US government is conspiring to prevent a cure for cancer, but I doubt it. The review that Sara cites has 268 Google Scholar cites, and some of that reading is interesting.
this article (not public access, need to get it thorough GaTech Library):
Cannabinoids as Potential Antitumoral Agents in Pancreatic Cancer G. Velasco, A. Carracedo, M. Lorente and M. GuzmánsaysPancreatology 2009, 39-49
On the basis of these preclinical findings, a pilot clinical study of ▵9-tetrahydrocannabinol (THC) in patients with recurrent glioblastoma multiforme has recently been run,see
A pilot clinical study of Δ9-tetrahydrocannabinol in patients with recurrent glioblastoma multiforme, Guzman M, Duarte MJ, Blazquez C, Ravina J, Rosa MC, Galve- Roperh I, Sanchez C, Velasco G, Gonzalez-Feria L, Br J Cancer 95 197–2003 (2006)
Targeting Cannabinoid Receptors in Brain Tumors, Guillermo Velasco, Arkaitz Carracedo, Cristina Blázquez, Mar Lorente, Tania Aguado, Cristina Sánchez, Ismael Galve-Roperh and Manuel Guzmán, in Cannabinoids and the Brain 2008, II, 361-374.This literature is immense (my estimate is over 5000 articles in last 5 years), beyond what layman can comprehend, and we need a native guide for this. Maybe we could get Engelbert's son Michael to join the blog and have look at it?
Predrag to Ed: How about trying to pull your Columbia professor rank, calling up the authors of the Columbia University clinical trial (2007) "showing that HIV/AIDS patients who inhaled cannabis four times daily experienced substantial increases in food intake with little evidence of discomfort and no impairment of cognitive performance." Not the problem at hand, but they should know what clinical trials are in progress? The director of these studies is Margaret Haney, try calling her? Please please introduce yourself as the Columbia Ratherferd Chair Professor in Astronomy, and not as Ed, medical people respect hierarchy.
Even it it does not slow down the tumor, it might be a palliative, and that cannot hurt.
More info on TTF / GBM clinical trial
[Since writing this story about TTF I have talked to several people
and learned a lot. I am not sure what I am allowed to quote so,
at the risk of failing to give due credit, I'll report some remarks
from various professionals without attribution. Is this in the
spirit of journalists who protect sources? I suppose not but I
feel undecided about this issue.]
One thing is now clarified. The government web posting that listed Dr. Gutin as running a clinical test on TTF at MSKCC (ClinicalTrials.gov) is out of date. (I must write a note of apology to Dr. G. I was intemperate.) Dr. Omuro told me that there was once such a program there but they no longer have one. The current trials are now occurring at the Weill Cornell Medical College. I have been told that the electric fields in TTF trials in ophthalmology have been are `unpredictable' and have caused burns. In the case of the others I have heard from, especially our own doctors, this is too risky a business without a sufficient guarantee of success.
Sara has this to say:
One thing is now clarified. The government web posting that listed Dr. Gutin as running a clinical test on TTF at MSKCC (ClinicalTrials.gov) is out of date. (I must write a note of apology to Dr. G. I was intemperate.) Dr. Omuro told me that there was once such a program there but they no longer have one. The current trials are now occurring at the Weill Cornell Medical College. I have been told that the electric fields in TTF trials in ophthalmology have been are `unpredictable' and have caused burns. In the case of the others I have heard from, especially our own doctors, this is too risky a business without a sufficient guarantee of success.
Sara has this to say:
Cells, networks, and organisms are indeed complex systems, in the sense that it is very hard to predict the global effects of localized interventions. I have seen many ideas that looked very logical and very promising when explained at the cellular level eventually fail when large clinical trials started. Sometimes the effect is simply not as expected. Sometimes the trials reveal unexpected interference with other systems as well as toxicity. Very few if any of these treatments deliver on their early promise.Predrag's notes: If Barbara gets into the GBM clinical trial (that can be done only after completion of the radiation and concurrent TMZ chemo), her hair would be shaved, electrodes attached, and she would have to have carry a 7 lb pack 24/7, indefinitely (see illustrations here).
I can see the appeal of this proposal for a simple intervention. But we do not know the effects that constant application of electric fields can have in the brain. What about cognitive abilities, which depend on electrical interactions among neurons? What about physical damage from the relentless application of EM fields? The TTF literature emphasizes that they interfere with cell division, but what else will they interfere with?
Saturday, August 21, 2010
The Prequel
[Ed: I write this in late August and, given the strains of the past four months, I may have gotten certain details such as names and dates slightly wrong. But the qualitative aspects of the narrative are likely to be OK. I won't soon forget them.]
Already by the winter of 2009-10, Barbara's sleeping habits had changed. From being a night person, she became someone who went to bed at 9:00 pm and was even lying in bed during afternoons, though reading much of that time. Since we had met as the only people in the breakfast line of the U. of Michigan cafeteria at 1:00 pm, I found this worrying. But, B did not think in terms of illness, so she refused to see a doctor about this.
Early one morning in late April of 2010, I woke up to find Barbara in a very distraught state. She had a terrible nausea and, after much urging, I got her to confess that she had been awakened by this feeling at 2:00 am. Nevertheless, it was not till 2:00 pm that I got her to call her doctor's office for advice on her continued, totally unproductive, nausea. The advice was to go to an emergency room. So I called our friend medical advisor (his sister had been a veterinarian ) Engelbert for advice about how to proceed. He said that if we went by taxi, we would spend a long time in the waiting room, so we should call an ambulance. B's primary care physician is connected to the NYU Medical Center, so I called there and learned that they did not send out ambulances and that the only choice was to call 911. I did that and twenty minutes later the door bell rang. When I asked who it was the answer was `the Fire Department.' So I let them in and, as it turned out, this was the ambulance crew --- the EMT. We had a pleasant if lengthy interaction but finally set out for the NYU hospital where B was wheeled straight into the ER on a stretcher.
After some time it was decided that Barbara was suffering from a Tako Tsubo Cardiomyopathy. This is a problem with the muscle in the left ventricle. It took a while, but finally a bed was found in the ICU after midnight. She spent a few days there and was then moved into a medical ward for another very few days and then went into the cardiac rehabilitation ward (The Rusk Institute). The cardiologist who dealt with B's case was Dr. Francis O'Brien. He is an associate of B's primary care doctor who never made an appearance and has not been heard from, as far as I know. When we last saw Dr. O'Brien, Barbara seemed to have largely recovered from the cardiomyopathy, though there has been no follow up for two months.
When I arrived at the ICU early on the morning of her admission, Dr. Greenwald (possibly a resident) was examining Barbara and, as they were speaking, she noticed that B was stumbling over words and she reacted immediately. She had B sent for cat scans and an MRI of the brain. These showed an object in the left frontal lobe whose nature was not obvious.
While all this was happening, I mentioned to Dr. Greenwald that I seemed to be bleeding internally and she urged me to go at once to the ER. I objected that I did not need another day like the previous one and that my problem was perhaps that I had not had a chance to eat during our day in the ER. But, being enterprising, she called the head of the ICU, the competent and pleasant Dr. Goldenberg, who lured me out of Barbara's room and persuaded me into a wheel chair for a rapid entry to the ER. Since B's room had an empty bed, I thought it was understood that they would put me in there. This sounded like a good plan to me, so I went along. But, instead, after another long day in the ER, I was admitted to the standard medical ward, not being sick enough for the ICU. Still, it was a great setup for visiting Barbara at all hours. Nevertheless, I was not completely happy with this arrangement, which lasted four days during which nothing wrong was found and I had stopped bleeding. I did enjoy many pleasant conversations with my doctors however.
In the end, B spent eleven days in the NYU facility with good care. While we both there, one of the weekly seminars was devoted to her case but I was not told about it till afterwards, which I found annoying. There was no telling from the MRI scan whether she had had a stroke, an infection or a tumor. So, in early May, after Barbara was released from the hospital, we returned for another MRI. We spoke with the neurosurgeon Dr. M. Smith who showed us both scans and pointed out how the enhancement, as he called it, had changed. Such rapid change seemed worrying to me, but Dr. Smith pointed out that this might be an effect of the steroid that Barbara was taking. The nature of Barbara's lesion remained in doubt.
At Engelbert's suggestion, we tried the apparently standard procedure of seeking a second opinion. Karl Lauby, a fellow chorister of Barbara's, recommended us to his friend Dr. Gutin of the Memorial Sloan-Kettering Cancer Center (MSKCC). He kindly agreed to see us with negligible delay but insisted that we must bring both scans. After chasing after the relevant person for three days (even unto Bellevue Hospital) I obtained a cd that was supposed to contain both scans. However, when we got to our appointment with Dr. Gutin, we were told (to our great embarrassment) that only the first scan was on the disk.
Dr. G. said he could not really diagnose from that alone but that the object looked like a glioma that had been there for quite a while. I spent the following week trying to get a disk with both scans and it was a painful experience. I was told that the radiology department of the NYU hospital was difficult about these things and was given incorrect locations and phone numbers for them. When I finally got to the right place with the help of a friendly guard, I found them extremely cooperative and compliant.
I dropped the new cd off with Dr. G.'s nurse Patsey Yeo-Ranamaker and a few days later Dr. Gutin called to say that his radiologist said that the scan indicated that Barbara had had a stroke and that we would not need him any longer.
I suppose that few people are happy to hear that they have had a stroke but we were among them. And so we went to Cape Cod for the beginning of the GFD Summer Program in Woods Hole. Dr. Gruber had ordered another scan for late June and, though I expressed surprise at the delay, I was not surprised to be unable to understand the answer, as I was by then getting used to this sort of thing.
When we returned to NY for the next scan, we left almost all our summer things on the Cape since we expected to be back in a few days. But, when we were told that the object in B's brain was definitely a tumor, the outlook changed. The NYU tumor group had judged the the tumor to be a lymphoma but the verdict from Sloan-Kettering was that it was a glioma. Both groups recommended a biopsy. The usual brain biopsy is done with a fine needle into the skull. But, since Barbara's tumor is in the speech center, this was too dangerous a procedure and a full blown operation was needed. I asked Dr. Gutin whether one could avoid the operation by simply composing a treatment that would apply whichever diagnosis was correct. (I thought that even a bit of overkill in the treatment might be better than an operation.) But I was told that this was not a suitable approach.
We had then to decide whether to have the operation done at NYU or MSKCC. In the latter case, Dr. Gutin would be the surgeon. Barbara opted for Dr. Gutin and the operation took place on July 8, one day after our 48th anniversary (on which I scalded my wrist and produced a second degree burn). For my part, I was impressed that Dr. Gutin had made the right diagnosis once and felt this kind of experience is very desirable in a case like this.
The operation lasted three hours and, afterwards, Dr. Gutin reported that Barbara had a class III glioma. (For those who have been lucky enough not to find out what that means, read the post from Sara Solla.)
Barbara's operation involved opening a flap of her skull to scrape out a bit of tissue. Dr. Gutin reported that, at the end of the surgery, a member of the team had dropped a small piece of bone on the floor. To avoid the risk of infection in using that piece, it was replaced by titanium. This kind of thing occurs in 3% of such operations. I decided, with sister Mimi's agreement, not to mention this to B till later. And so the saga began.
Already by the winter of 2009-10, Barbara's sleeping habits had changed. From being a night person, she became someone who went to bed at 9:00 pm and was even lying in bed during afternoons, though reading much of that time. Since we had met as the only people in the breakfast line of the U. of Michigan cafeteria at 1:00 pm, I found this worrying. But, B did not think in terms of illness, so she refused to see a doctor about this.
Early one morning in late April of 2010, I woke up to find Barbara in a very distraught state. She had a terrible nausea and, after much urging, I got her to confess that she had been awakened by this feeling at 2:00 am. Nevertheless, it was not till 2:00 pm that I got her to call her doctor's office for advice on her continued, totally unproductive, nausea. The advice was to go to an emergency room. So I called our friend medical advisor (his sister had been a veterinarian ) Engelbert for advice about how to proceed. He said that if we went by taxi, we would spend a long time in the waiting room, so we should call an ambulance. B's primary care physician is connected to the NYU Medical Center, so I called there and learned that they did not send out ambulances and that the only choice was to call 911. I did that and twenty minutes later the door bell rang. When I asked who it was the answer was `the Fire Department.' So I let them in and, as it turned out, this was the ambulance crew --- the EMT. We had a pleasant if lengthy interaction but finally set out for the NYU hospital where B was wheeled straight into the ER on a stretcher.
After some time it was decided that Barbara was suffering from a Tako Tsubo Cardiomyopathy. This is a problem with the muscle in the left ventricle. It took a while, but finally a bed was found in the ICU after midnight. She spent a few days there and was then moved into a medical ward for another very few days and then went into the cardiac rehabilitation ward (The Rusk Institute). The cardiologist who dealt with B's case was Dr. Francis O'Brien. He is an associate of B's primary care doctor who never made an appearance and has not been heard from, as far as I know. When we last saw Dr. O'Brien, Barbara seemed to have largely recovered from the cardiomyopathy, though there has been no follow up for two months.
When I arrived at the ICU early on the morning of her admission, Dr. Greenwald (possibly a resident) was examining Barbara and, as they were speaking, she noticed that B was stumbling over words and she reacted immediately. She had B sent for cat scans and an MRI of the brain. These showed an object in the left frontal lobe whose nature was not obvious.
While all this was happening, I mentioned to Dr. Greenwald that I seemed to be bleeding internally and she urged me to go at once to the ER. I objected that I did not need another day like the previous one and that my problem was perhaps that I had not had a chance to eat during our day in the ER. But, being enterprising, she called the head of the ICU, the competent and pleasant Dr. Goldenberg, who lured me out of Barbara's room and persuaded me into a wheel chair for a rapid entry to the ER. Since B's room had an empty bed, I thought it was understood that they would put me in there. This sounded like a good plan to me, so I went along. But, instead, after another long day in the ER, I was admitted to the standard medical ward, not being sick enough for the ICU. Still, it was a great setup for visiting Barbara at all hours. Nevertheless, I was not completely happy with this arrangement, which lasted four days during which nothing wrong was found and I had stopped bleeding. I did enjoy many pleasant conversations with my doctors however.
In the end, B spent eleven days in the NYU facility with good care. While we both there, one of the weekly seminars was devoted to her case but I was not told about it till afterwards, which I found annoying. There was no telling from the MRI scan whether she had had a stroke, an infection or a tumor. So, in early May, after Barbara was released from the hospital, we returned for another MRI. We spoke with the neurosurgeon Dr. M. Smith who showed us both scans and pointed out how the enhancement, as he called it, had changed. Such rapid change seemed worrying to me, but Dr. Smith pointed out that this might be an effect of the steroid that Barbara was taking. The nature of Barbara's lesion remained in doubt.
At Engelbert's suggestion, we tried the apparently standard procedure of seeking a second opinion. Karl Lauby, a fellow chorister of Barbara's, recommended us to his friend Dr. Gutin of the Memorial Sloan-Kettering Cancer Center (MSKCC). He kindly agreed to see us with negligible delay but insisted that we must bring both scans. After chasing after the relevant person for three days (even unto Bellevue Hospital) I obtained a cd that was supposed to contain both scans. However, when we got to our appointment with Dr. Gutin, we were told (to our great embarrassment) that only the first scan was on the disk.
Dr. G. said he could not really diagnose from that alone but that the object looked like a glioma that had been there for quite a while. I spent the following week trying to get a disk with both scans and it was a painful experience. I was told that the radiology department of the NYU hospital was difficult about these things and was given incorrect locations and phone numbers for them. When I finally got to the right place with the help of a friendly guard, I found them extremely cooperative and compliant.
I dropped the new cd off with Dr. G.'s nurse Patsey Yeo-Ranamaker and a few days later Dr. Gutin called to say that his radiologist said that the scan indicated that Barbara had had a stroke and that we would not need him any longer.
I suppose that few people are happy to hear that they have had a stroke but we were among them. And so we went to Cape Cod for the beginning of the GFD Summer Program in Woods Hole. Dr. Gruber had ordered another scan for late June and, though I expressed surprise at the delay, I was not surprised to be unable to understand the answer, as I was by then getting used to this sort of thing.
When we returned to NY for the next scan, we left almost all our summer things on the Cape since we expected to be back in a few days. But, when we were told that the object in B's brain was definitely a tumor, the outlook changed. The NYU tumor group had judged the the tumor to be a lymphoma but the verdict from Sloan-Kettering was that it was a glioma. Both groups recommended a biopsy. The usual brain biopsy is done with a fine needle into the skull. But, since Barbara's tumor is in the speech center, this was too dangerous a procedure and a full blown operation was needed. I asked Dr. Gutin whether one could avoid the operation by simply composing a treatment that would apply whichever diagnosis was correct. (I thought that even a bit of overkill in the treatment might be better than an operation.) But I was told that this was not a suitable approach.
We had then to decide whether to have the operation done at NYU or MSKCC. In the latter case, Dr. Gutin would be the surgeon. Barbara opted for Dr. Gutin and the operation took place on July 8, one day after our 48th anniversary (on which I scalded my wrist and produced a second degree burn). For my part, I was impressed that Dr. Gutin had made the right diagnosis once and felt this kind of experience is very desirable in a case like this.
Barbara's operation involved opening a flap of her skull to scrape out a bit of tissue. Dr. Gutin reported that, at the end of the surgery, a member of the team had dropped a small piece of bone on the floor. To avoid the risk of infection in using that piece, it was replaced by titanium. This kind of thing occurs in 3% of such operations. I decided, with sister Mimi's agreement, not to mention this to B till later. And so the saga began.
The Barbara Saga
[An update for friends who have missed some of Ed's bulletins over the past two months. Read the prequel first. There are a few more details in the Blog Archive, links to the right of this text]
A Day at S-K, July 13
Barbara was released from the Sloan-Ketterng 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 first 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 meters$^2$. 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 effects 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. I don't know how to set up a mass mailing format. I do not dare ask JLT how, since he has become quite surly about such requests. And poor GRI has been working overtime on such request for help so I did not dare to bother him again.
Above all, I thank you all for your concern and good wishes.
Sunday, July 25
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 froide 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.
A Traumatic Day
[Early on July 27, B had a seizure and the right side of her face went into convulsions. The following bulletin describes how that started, but this brief statement itself may be enough for some who are interested in the saga. It was such a jarring experience for me that I felt like writing it down but it may be more than some may want to know.]
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 and just 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. She was still having facial spasms.
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.
We went into the ER where the nurses were especially competent in setting up an EKG but Barbara's facial spasms kept up all morning. She could not speak at all. Finally, in the early afternoon, B was moved up to the neuro-surveillance ward where she had gone after her two days of recovery from her operation two weeks previously. The convulsions had finally stopped by around 2:00. 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 we could not make out any words.
This is being written during the course of the morning of Wednesday, July 28. B has slept most of that time but, in her waking moments, has gotten out a very few words. The homonyms are tricky to understand 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're. The mother of the patient in the next alcove is a speech therapist and dropped in once to help to help also. She said she wished she had more time to help Barbara and that was real compassion. But she had her own hill to climb.
Still on Wednesday the 28
Before the seizure, B was on Levetiracetam (Keppra) 500mg every 12h. They doubled the dosage yesterday and added ativan (I don't know the dosage). (Those are both antiseizure medications.)
The doctors say that, although there is now no visible sign of seizure, Barbara still has continual small seizures according to the EEG. That's why they have been adding ativan to the keppra treatment. The ativan halts the seizures but it is a temporary thing. A long-lived seizure can cause brain damage so they now want to give her phenobarbital. But pheno carries a risk of stopping breathing when given in large doses. (Ativan does also but the risk is less.) Even though the dosage is less than would be given for a grand mal, there is, because of her age, an added 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 the odds in her favor.)
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 advice of the doctors on the seizure team (after consulting B's sister Mimi) asking only that the pheno be held off till the morning.
[From B's room near the end of visiting hours. Sorry for the scattered thoughts.]
Procrastination Pays
[We are now on Thursday, July 29. Last night two young oncologists explained the situation to me. They were Dr. Tao and a man whose name is as long as any name I have ever seen; it is Thai... and he is known by his colleagues simply as Dr. Thai. They 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 neuro-surveillance procedure. I have been told different versions of what this means. I imagine that, in the seizure mode, several neurons near the the tumor start to fire 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 were 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 agreed to stay with the ativan until Thursday morning.]
I had sent off a 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. Very early next morning, I checked the email and found a letter from Sara at NWU Med School. She reported this:
I went to the Beth Israel clinic for its eight o'clock opening to have my wrist rebandaged [I had a second degree burn on the morning of July 7.] and got to S-K by nine. (It seemed 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.
The Aftermath
At 10:00 pm on Thursday, B got some oral phenobarbital and the next morning the seizures were essentially over. (I say essentially because I heard some 'yes, but' in Dr. Thai...'s voice during the account.) So the worst was over. However, she still was not speaking normally and was saying some incomprehensible things and repeating them robotically. The next morning (Friday, 7/30), she was set upon by a pair of therapists (one physical the other occupational) who got her to sit in a chair and harangued her. In the midst of this activity Dr. Omuro came by on rounds and pleasantly told us that he was pleased with the progress. He said let's get this cleared up so that we can get on with the treatment and get rid of this thing, or words to that effect.
Then the EEG machine that was monitoring the seizures was disconnected on the grounds that the seizures were over. Still I had the impression that they were exhibiting on/off intermittency but essentially in the off state. (There is a lot of dynamics there that I do not understand at all and I am sorry that I don't know enough about all this to report on it.) The processes of detaching the machine involved pulling off the patches that were stuck to B's head. There were of the order of twenty of them and their removal involved pulling hair and it got quite painful, though she remained silent through the ordeal. In the afternoon, B was moved from the surveillance ward to a normal room (with roommate).
Now it is late on Sunday afternoon. Barbara had her first solid food today (she had been on purees only) and is now sleeping a lot. They are talking about releasing her though she is not thinking completely clearly yet is becoming strong willed. I believe that this is a result of being back on steroids that are given to reduce swelling. Apart from various medical interventions, it has been a quiet day. The only worry is that B has not yet gotten into her normal mental state, even that of the past couple of months. She is slow to remember her last name and does not know the name of the hospital. But she can converse and reads the newspaper. I suppose that we'll soon be able to meet Dr. Chan, the radiation oncologist.
The Long Haul
This afternoon (one week plus a few hours after the seizure) we were told that they were considering releasing Barbara tomorrow. She still sometimes loses the thread of conversations and her walking is unstable. She does not listen to sensible suggestions by the nurse's aids or me. I am worried about the procedure to follow. I think we should have someone watching her when I sleep and also someone to look after her when I need to go out to shop or whatever. The hospital's canned information is not very helpful. And I am not so good at arranging this kind of thing.
The date with another radiation oncologist, Dr. Yamada, is now set for Aug. 11. It will be a difficult week ahead. People have been offering help but I am not sure what they should do. Others are making suggestions about hiring help but I am not good at hiring and firing so I am not sure if I can do any of that.
Back on LaGuardia Place
[I am hearing from people who have missed some installments of The Saga. The way I send those blurbs is completely unsystematic and some people got two copies and some got none. I apologize to both groups. I figure if I send them out at random, they will diffuse and find their way to the right places. This is not working so well so please send them to anyone that may be interested. I got so worn out answering individual inquiries that I tried this spammish approach. Unfortunately, I did not realize how many I would need to send so have not kept track of whom I sent to nor who had asked. Some of the mailings were forwarded to others so that I have gotten letters from people I had not heard from in years. Apparently the system works partially.]
As in all such serials, I ought to begin each installment with a synopsis of the past events. I don't have the strength to do this so let me just say for those who have just tuned in that Barbara had a seizure on Tuesday, July 27 and spent the following harrowing week at Sloan-Kettering. I was there all day every day (except to sneak away for a visit to a good friend who is recuperating from a kidney operation at the NYU Medical Center). We were even able to eat our meals together thanks to a system at S-K for guest meals paid for by credit card. We finally came home on Tuesday evening Aug 3, though I felt that Barbara was not yet really well enough to be out of the hospital.
At the hospital it was known that Barbara's condition (walking, speaking) had improved considerably, but that there were still some instabilities in her balance apparatus. So it was deemed advisable for someone to stay by her at all times. This feeling was made more urgent by her reluctance to accept her instability and to act as if she were in her normal physical condition. So the issue was raised whether I could handle the situation on my own. Many friends have since come forward with offers of help and suggestions about how to hire helpers.
Occasional help would be good but B is reluctant to have anyone around. I think this is because, although she is very fatigued, she feels that she must be 'herself' and be welcoming and attentive and that requires an effort for which she does not have the energy. . This may change. As for getting paid help, I can't imagine going to bed with someone in the next room standing guard over Barbara. And what would such a person do all night? There is no tv and most people would not want to read all that time. We don't have the physical set up for this and I just don't see how it would work.
Also, I don't want to interview people for such jobs. I would rather be worn down than face the psychological strain of hiring and firing --- competence of that kind has always eluded me. ({\sl When I first came to Columbia, the head of the dept., Lo Woltjer, said he was going off for six weeks and was appointing me acting head. It happened that a new secretary had just been hired. On my second day in office, a colleague came to me to say that the new secretary was a disaster and should be fired at once. Faced with this crisis, I stayed home for the remainder of my term until Woltjer returned and did what needed to be done.) Anyway, I'll go on as we are for a time, though Barbara is not making it easy. She does not like to curtail her activities and is too active when she is not sleeping. (She does sleep much of the time.) She has to be watched carefully and I hesitate to go and brush my teeth.
On Wednesday, B had some head pain. She had that two days before the seizure so that I am on red alert just now. We are on our own till the eleventh when we see the new radiation oncologist (Dr. Y. Yamada). We never met the last one since we did not make it to the appointment. These specialists are quite booked up so we were transferred to Dr. Y. The seizure has delayed treatment by at least two weeks. All in all, things have gone very slowly --- the first sign of illness was on April 26. Anyway, 650 mg of Tylenol did away with the pain quickly as on the previous occasion. Then sister Mimi brought lunch for the two of them so that I could go and have the bandage on my wrist changed.
On Thursday, a nurse showed up to give Barbara an injection to slow her clotting rate. This was supposed to have been administered as part of the checkout process (as ordered by Dr. Omuro) but had been overlooked. The nurse expected us to have the medication to be injected (Fragmin) or at least a prescription for it. But neither of us had been told of this nor given any prescription. So there was a flurry of calls and it was decided that the prescription would be phoned in to our local pharmacy. This may prompt another call from Medco such as the one we received on Tuesday evening that upset Barbara with their haranguing her to patronize them, even if we needed the stuff faster than they could provide it. (We sent to them for the pills for her chemotherapy over two weeks ago but so far they haven't arrived.) Another nurse is due tomorrow to inject the anti-clotting potion.
So now it is tomorrow, that is, Friday. We expect a speech therapist at 11:30 and the nurse has announced arrival between 1 and 2. (Yesterday's nurse was intelligent and that was nice.) Barbara seems weak. Her muscles have shrunk and she does not want to walk or exercise, though the physical therapist gave her some simple exercises to try. But that was before the seizure, which seems to have been demoralizing. Anyway, it should be a quiet weekend.
[I am afraid I am slipping into diary mode rather than keeping to just the facts. But I have not got the free time to edit this thing since B is now awake. At least I have not gone into the details of our plumbing problems.]
A Day at S-K, July 13
Barbara was released from the Sloan-Ketterng 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 first 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 meters$^2$. 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 effects 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. I don't know how to set up a mass mailing format. I do not dare ask JLT how, since he has become quite surly about such requests. And poor GRI has been working overtime on such request for help so I did not dare to bother him again.
Above all, I thank you all for your concern and good wishes.
Sunday, July 25
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 froide 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.
A Traumatic Day
[Early on July 27, B had a seizure and the right side of her face went into convulsions. The following bulletin describes how that started, but this brief statement itself may be enough for some who are interested in the saga. It was such a jarring experience for me that I felt like writing it down but it may be more than some may want to know.]
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 and just 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. She was still having facial spasms.
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.
We went into the ER where the nurses were especially competent in setting up an EKG but Barbara's facial spasms kept up all morning. She could not speak at all. Finally, in the early afternoon, B was moved up to the neuro-surveillance ward where she had gone after her two days of recovery from her operation two weeks previously. The convulsions had finally stopped by around 2:00. 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 we could not make out any words.
This is being written during the course of the morning of Wednesday, July 28. B has slept most of that time but, in her waking moments, has gotten out a very few words. The homonyms are tricky to understand 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're. The mother of the patient in the next alcove is a speech therapist and dropped in once to help to help also. She said she wished she had more time to help Barbara and that was real compassion. But she had her own hill to climb.
Still on Wednesday the 28
Before the seizure, B was on Levetiracetam (Keppra) 500mg every 12h. They doubled the dosage yesterday and added ativan (I don't know the dosage). (Those are both antiseizure medications.)
The doctors say that, although there is now no visible sign of seizure, Barbara still has continual small seizures according to the EEG. That's why they have been adding ativan to the keppra treatment. The ativan halts the seizures but it is a temporary thing. A long-lived seizure can cause brain damage so they now want to give her phenobarbital. But pheno carries a risk of stopping breathing when given in large doses. (Ativan does also but the risk is less.) Even though the dosage is less than would be given for a grand mal, there is, because of her age, an added 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 the odds in her favor.)
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 advice of the doctors on the seizure team (after consulting B's sister Mimi) asking only that the pheno be held off till the morning.
[From B's room near the end of visiting hours. Sorry for the scattered thoughts.]
Procrastination Pays
[We are now on Thursday, July 29. Last night two young oncologists explained the situation to me. They were Dr. Tao and a man whose name is as long as any name I have ever seen; it is Thai... and he is known by his colleagues simply as Dr. Thai. They 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 neuro-surveillance procedure. I have been told different versions of what this means. I imagine that, in the seizure mode, several neurons near the the tumor start to fire 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 were 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 agreed to stay with the ativan until Thursday morning.]
I had sent off a 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. Very 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 rebandaged [I had a second degree burn on the morning of July 7.] and got to S-K by nine. (It seemed 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.
The Aftermath
At 10:00 pm on Thursday, B got some oral phenobarbital and the next morning the seizures were essentially over. (I say essentially because I heard some 'yes, but' in Dr. Thai...'s voice during the account.) So the worst was over. However, she still was not speaking normally and was saying some incomprehensible things and repeating them robotically. The next morning (Friday, 7/30), she was set upon by a pair of therapists (one physical the other occupational) who got her to sit in a chair and harangued her. In the midst of this activity Dr. Omuro came by on rounds and pleasantly told us that he was pleased with the progress. He said let's get this cleared up so that we can get on with the treatment and get rid of this thing, or words to that effect.
Then the EEG machine that was monitoring the seizures was disconnected on the grounds that the seizures were over. Still I had the impression that they were exhibiting on/off intermittency but essentially in the off state. (There is a lot of dynamics there that I do not understand at all and I am sorry that I don't know enough about all this to report on it.) The processes of detaching the machine involved pulling off the patches that were stuck to B's head. There were of the order of twenty of them and their removal involved pulling hair and it got quite painful, though she remained silent through the ordeal. In the afternoon, B was moved from the surveillance ward to a normal room (with roommate).
Now it is late on Sunday afternoon. Barbara had her first solid food today (she had been on purees only) and is now sleeping a lot. They are talking about releasing her though she is not thinking completely clearly yet is becoming strong willed. I believe that this is a result of being back on steroids that are given to reduce swelling. Apart from various medical interventions, it has been a quiet day. The only worry is that B has not yet gotten into her normal mental state, even that of the past couple of months. She is slow to remember her last name and does not know the name of the hospital. But she can converse and reads the newspaper. I suppose that we'll soon be able to meet Dr. Chan, the radiation oncologist.
The Long Haul
This afternoon (one week plus a few hours after the seizure) we were told that they were considering releasing Barbara tomorrow. She still sometimes loses the thread of conversations and her walking is unstable. She does not listen to sensible suggestions by the nurse's aids or me. I am worried about the procedure to follow. I think we should have someone watching her when I sleep and also someone to look after her when I need to go out to shop or whatever. The hospital's canned information is not very helpful. And I am not so good at arranging this kind of thing.
The date with another radiation oncologist, Dr. Yamada, is now set for Aug. 11. It will be a difficult week ahead. People have been offering help but I am not sure what they should do. Others are making suggestions about hiring help but I am not good at hiring and firing so I am not sure if I can do any of that.
Back on LaGuardia Place
[I am hearing from people who have missed some installments of The Saga. The way I send those blurbs is completely unsystematic and some people got two copies and some got none. I apologize to both groups. I figure if I send them out at random, they will diffuse and find their way to the right places. This is not working so well so please send them to anyone that may be interested. I got so worn out answering individual inquiries that I tried this spammish approach. Unfortunately, I did not realize how many I would need to send so have not kept track of whom I sent to nor who had asked. Some of the mailings were forwarded to others so that I have gotten letters from people I had not heard from in years. Apparently the system works partially.]
As in all such serials, I ought to begin each installment with a synopsis of the past events. I don't have the strength to do this so let me just say for those who have just tuned in that Barbara had a seizure on Tuesday, July 27 and spent the following harrowing week at Sloan-Kettering. I was there all day every day (except to sneak away for a visit to a good friend who is recuperating from a kidney operation at the NYU Medical Center). We were even able to eat our meals together thanks to a system at S-K for guest meals paid for by credit card. We finally came home on Tuesday evening Aug 3, though I felt that Barbara was not yet really well enough to be out of the hospital.
At the hospital it was known that Barbara's condition (walking, speaking) had improved considerably, but that there were still some instabilities in her balance apparatus. So it was deemed advisable for someone to stay by her at all times. This feeling was made more urgent by her reluctance to accept her instability and to act as if she were in her normal physical condition. So the issue was raised whether I could handle the situation on my own. Many friends have since come forward with offers of help and suggestions about how to hire helpers.
Occasional help would be good but B is reluctant to have anyone around. I think this is because, although she is very fatigued, she feels that she must be 'herself' and be welcoming and attentive and that requires an effort for which she does not have the energy. . This may change. As for getting paid help, I can't imagine going to bed with someone in the next room standing guard over Barbara. And what would such a person do all night? There is no tv and most people would not want to read all that time. We don't have the physical set up for this and I just don't see how it would work.
Also, I don't want to interview people for such jobs. I would rather be worn down than face the psychological strain of hiring and firing --- competence of that kind has always eluded me. ({\sl When I first came to Columbia, the head of the dept., Lo Woltjer, said he was going off for six weeks and was appointing me acting head. It happened that a new secretary had just been hired. On my second day in office, a colleague came to me to say that the new secretary was a disaster and should be fired at once. Faced with this crisis, I stayed home for the remainder of my term until Woltjer returned and did what needed to be done.) Anyway, I'll go on as we are for a time, though Barbara is not making it easy. She does not like to curtail her activities and is too active when she is not sleeping. (She does sleep much of the time.) She has to be watched carefully and I hesitate to go and brush my teeth.
On Wednesday, B had some head pain. She had that two days before the seizure so that I am on red alert just now. We are on our own till the eleventh when we see the new radiation oncologist (Dr. Y. Yamada). We never met the last one since we did not make it to the appointment. These specialists are quite booked up so we were transferred to Dr. Y. The seizure has delayed treatment by at least two weeks. All in all, things have gone very slowly --- the first sign of illness was on April 26. Anyway, 650 mg of Tylenol did away with the pain quickly as on the previous occasion. Then sister Mimi brought lunch for the two of them so that I could go and have the bandage on my wrist changed.
On Thursday, a nurse showed up to give Barbara an injection to slow her clotting rate. This was supposed to have been administered as part of the checkout process (as ordered by Dr. Omuro) but had been overlooked. The nurse expected us to have the medication to be injected (Fragmin) or at least a prescription for it. But neither of us had been told of this nor given any prescription. So there was a flurry of calls and it was decided that the prescription would be phoned in to our local pharmacy. This may prompt another call from Medco such as the one we received on Tuesday evening that upset Barbara with their haranguing her to patronize them, even if we needed the stuff faster than they could provide it. (We sent to them for the pills for her chemotherapy over two weeks ago but so far they haven't arrived.) Another nurse is due tomorrow to inject the anti-clotting potion.
So now it is tomorrow, that is, Friday. We expect a speech therapist at 11:30 and the nurse has announced arrival between 1 and 2. (Yesterday's nurse was intelligent and that was nice.) Barbara seems weak. Her muscles have shrunk and she does not want to walk or exercise, though the physical therapist gave her some simple exercises to try. But that was before the seizure, which seems to have been demoralizing. Anyway, it should be a quiet weekend.
[I am afraid I am slipping into diary mode rather than keeping to just the facts. But I have not got the free time to edit this thing since B is now awake. At least I have not gone into the details of our plumbing problems.]
Friday, August 20, 2010
Speech therapy
[Ed' news of the day, as recounted to Predrag]
B. is too fatigued for longer excursions. Her short term memory is still not working since the seizure. She has the thrice weekly speech therapy that last until the end of next week, to help with restoring thinking processes.
The latest homework: name 10 body parts with only three letters.
[Predrag: oops! I need that therapist too]
B. is too fatigued for longer excursions. Her short term memory is still not working since the seizure. She has the thrice weekly speech therapy that last until the end of next week, to help with restoring thinking processes.
The latest homework: name 10 body parts with only three letters.
[Predrag: oops! I need that therapist too]
Thursday, August 19, 2010
A hike across Washington Square
[Ed' news of the day, as recounted to Predrag]
In today's big adventure, Ed and Barbara hiked over to Washington Square Park and, from there, using this new fangled twist on the art of telephony, Ed dialed Engelbert Schucking's apartment to asked whether they could visit. And it worked. The system works so long as Ed has the instrument with him. Which is not as simple as you might think. After 48 hours of having it, Ed lost the instrument. Due to the kindness of a cast including construction workers, speech therapists and neighbors, the instrument is back. For how long? Engelbert's son claims that Ed can text. But why would he want to? (When the discovery of the muon was reported during a Chinese lunch, Rabi reportedly said 'who ordered that?')
To quote Ed: "You have done amazingly and have dragged me into the 20th century in spite of myself."
Who's going to bring him the bad news? about what century...
In today's big adventure, Ed and Barbara hiked over to Washington Square Park and, from there, using this new fangled twist on the art of telephony, Ed dialed Engelbert Schucking's apartment to asked whether they could visit. And it worked. The system works so long as Ed has the instrument with him. Which is not as simple as you might think. After 48 hours of having it, Ed lost the instrument. Due to the kindness of a cast including construction workers, speech therapists and neighbors, the instrument is back. For how long? Engelbert's son claims that Ed can text. But why would he want to? (When the discovery of the muon was reported during a Chinese lunch, Rabi reportedly said 'who ordered that?')
To quote Ed: "You have done amazingly and have dragged me into the 20th century in spite of myself."
Who's going to bring him the bad news? about what century...
Sunday, August 15, 2010
Complementary Treatments
GBM clinical trial: Electric fields
[see also Sara's notes on this]
Barbara's friend Seth Shulman sent the following information to B's sister Mimi:
After some days I have had no response.
Barbara's friend Seth Shulman sent the following information to B's sister Mimi:
I uncovered this clinical trial of a new Israeli technology in a meeting that I had today with Julian Itzcovitz in Paris. This technology is used in conjunction with standard radiation treatment and chemotherapy, and it appears to significantly extend life expectancies in the people with glioma and glioblastoma who have received it to date. As you will see below, MSK is one of the trial sites, and Dr. Gutin is running that trial. It seems that this additional therapy can only help, and unlike other radiation or chemo treatments doesn't appear to have serious potential of side effects.For a description of this approach see www.novocuretrial.com/science.html. Here is another URL that is less direct. Dr. I. continues:
I also verified for the clinical trial sites that are running today in the U.S., particularly in the N.Y. area and found out a phase III clinical trial at Memorial Sloan-Kettering Cancer Center. The study Director there is Dr. Philip H. Gutin, MD that you can directly contact to verify if your friend can be included in the study. Also, the link to the clinical trial information is the following, where you can find publications on the first clinical results: clinicaltrials.gov/ct2/show/NCT00916409On learning of this, I wrote to Dr. Gutin and asked if Barbara could be included in the clinical trials. He suggested that I contact Dr. Omuro, whom I wrote to next. The response was a phone call from a Dr. Boland on behalf of Dr. Omuro. It would be improper for me to quote him from memory but the content of our conversation was that MSKCC does not have that protocol. This surprised me since there are on the web (clinicaltrials.gov/ct2/home) some details of the procedure in which one sees
26 Study LocationsSo I wrote to Dr. Gutin to ask why I was getting a runaround. I knew I was being intemperate but I was upset because I felt rejection in this case ought to be accompanied by an explanation, no matter how obscure or technical.
Sponsors and Collaborators NovoCure Ltd. Investigators
- Study Director: Roger Stupp, MD University of Lausanne Hospital - Multidisciplinary Oncology Center
- Study Director: Philip H. Gutin, MD Memorial Sloan-Kettering Cancer Center
- Study Director: Eric T. Wong, MD Beth Israel Deaconess Medical Center
- Study Director: Herbert H. Engelhard, MD, PhD University of Illinois
- Study Director: Manfred Westphal, Prof. MD Universitaetsklinikum Hamburg-Eppendorf
- Study Director: Robert J. Weil, MD The Cleveland Clinic
After some days I have had no response.
Wednesday, August 11, 2010
Neuropathologists
The blog is empty until such time Ed masters the art of blogging. Will alert you when it comes back again. Until then:
Jim Murray:
Jim Murray:
"What is a difference between G_d and a neuropathologist?"
"G_d does not believe he is a neuropathologist"
Monday, August 9, 2010
Delays in the treatment...
Dr Gutin writes: Ed, you can talk to Dr. Omuro about clinical trials with the NovoTTF-100A device. We don't do that protocol here. I would recommend that Barbara start treatment immediately. Too many delays.
The onset of treatment has been aggravatingly slow, they were dragging their feet all the way. We don't see Omuro till a week from tomorrow so I don't know how to get into the TTF trials. Perhaps I should email Omuro.
Muddling through
Barbara is not a very cooperative patient, which is why I hesitate to leave her with amateurs. But we are muddling through on our own with help from Mimi for now.
We'll see the radiation oncologist Yamada on Wednesday, Aug 11.
Amazingly, between watching B and other things, I have almost no free time. She sleeps for a couple of hours after breakfast, which is my main internet time.
We'll see the radiation oncologist Yamada on Wednesday, Aug 11.
Amazingly, between watching B and other things, I have almost no free time. She sleeps for a couple of hours after breakfast, which is my main internet time.
Friday, August 6, 2010
Back to Laguardia Place
I am hearing from people who have missed some installments of what I think of as the Barbara saga. The way I send those blurbs is completely unsystematic and some people got two copies and some got none. I apologize to both groups. I figure if I send them out at random, they will diffuse and find their way to the right places. This is not working so well so please send them to anyone that may be interested. I got so worn out answering individual inquiries that I tried this spammish approach. Unfortunately, I did not realize how many I would need to send so have not kept track of whom I sent to nor who had asked. Some of the mailings were forwarding on so that I have gotten letters from people I had not heard from in years. Apparently the system works partially.
As in all such serials, I ought to begin each installment with a synopsis of the past events. I don't have the strength to do this so let me just say that Barbara had a seizure on Tuesday, July 27 and spent the following harrowing week at Sloan-Kettering. I was there all day every day (except to sneak away for a visit to a good friend who is recuperating from a kidney operation at the NYU Medical Center). We were even able to eat our meals together thanks to system at S-K for guest meals paid for by credit card. We finally came home on Tuesday evening Aug 3, though I felt that Barbara was not yet really well enough to be out of the hospital.
At the hospital it was known that Barbara's condition (walking, speaking) had improved considerably, but that there were still some instabilities in her balance apparatus. So it was deemed advisable for someone to stay by her at all times. This feeling was made more urgent by her reluctance to accept her instability and to act as if she were in her normal physical condition. So the issue was raised whether I could handle the situation on my own. Many friends have since come forward with offers of help and suggestions about how to hire helpers.
Occasional help would be good but B is reluctant to have anyone around. I think this is because she feels that she must be attentive and that requires an effort, which wears her out. This may change. As for getting paid help, I can't imagine going to bed with someone in the next room standing guard over Barbara. And what would such a person do all night? There is no TV and most people would not want to read all that time. We don't have the physical set up for this and I just don't see how it would work.
Also, I don't want to interview people for such jobs. I would rather be worn down than face the psychological strain of hiring and firing — competence of that kind has always eluded me. (When I first came to Columbia, the head of the dept., Lo Woltjer, said he was going off for six weeks and was appointing me acting head. It happened that a new secretary had just been hired. On my second day in office, people came to me to say that the new secretary was a disaster and should be fired at once. Faced with this crisis, I fell into my family's way of dealing with such problems. I stayed home for the remainder of my term till Woltjer came back and did what needed to be done. I often wonder if avoidance of that unpleasantness was the cause of his departure.) Anyway, I'll go on as we are for a time, though Barbara is not making it easy. She does not like to curtail her activities and is too active when she is not sleeping. (She does sleep much of the time.) She has to be watched carefully and I hesitate to go and brush my teeth.
On Wednesday, B had some head pain. She had that two days before the seizure so that I am on red alert just now. We are on our own till the eleventh when we see the new radiation oncologist (Dr. Y. Yamada). We never met the last one since we did not make it to the appointment. These specialists are quite booked up so we were transferred to Dr. Y. The seizure has delayed treatment by at least two weeks. All in all, things have gone very slowly — the first sign of illness was on April 26. Anyway, 650 mg of Tylenol did away with the pain quickly as on the previous occasion. Then sister Mimi brought lunch for the two of them so that I could go and have the bandage on my wrist changed.
On Thursday, a nurse showed up to give Barbara an injection to slow her clotting rate. This was supposed to have been administered as part of the checkout process (as ordered by Dr. Omuro) but had been overlooked. The nurse expected us to have a prescription for the medication to be injected (Fragmin) but neither of us had been told of this nor given any prescription. So there was a flurry of calls and it was decided that the prescription would be phoned in to our local pharmacy. This may prompt another call from Medco such as the one we received on Tuesday evening that upset Barbara with their haranguing about patronizing them even if we needed the stuff fast. (We sent in for the pills for her chemotherapy over two weeks ago but so far none have arrived.) Another nurse is due tomorrow to inject the anticoagulation potion. So now it is tomorrow, that is, Friday. We expect a speech therapist at 11:30 and the nurse has announced arrival between 1 and 2. (Yesterday's nurse was intelligent and that was nice.)
Barbara seems weak. Her muscles have shrunk and she does not want to walk or exercise, though the physical therapist gave her some simple exercises to try. But that was before the seizure which seems to have been demoralizing. Anyway, it should be quiet weekend.
(I am afraid I am slipping into diary mode rather than keeping to just the facts. But I have not got the free time to edit this thing since B is now awake. At least I have not gone into the details of our plumbing problems.)
As in all such serials, I ought to begin each installment with a synopsis of the past events. I don't have the strength to do this so let me just say that Barbara had a seizure on Tuesday, July 27 and spent the following harrowing week at Sloan-Kettering. I was there all day every day (except to sneak away for a visit to a good friend who is recuperating from a kidney operation at the NYU Medical Center). We were even able to eat our meals together thanks to system at S-K for guest meals paid for by credit card. We finally came home on Tuesday evening Aug 3, though I felt that Barbara was not yet really well enough to be out of the hospital.
At the hospital it was known that Barbara's condition (walking, speaking) had improved considerably, but that there were still some instabilities in her balance apparatus. So it was deemed advisable for someone to stay by her at all times. This feeling was made more urgent by her reluctance to accept her instability and to act as if she were in her normal physical condition. So the issue was raised whether I could handle the situation on my own. Many friends have since come forward with offers of help and suggestions about how to hire helpers.
Occasional help would be good but B is reluctant to have anyone around. I think this is because she feels that she must be attentive and that requires an effort, which wears her out. This may change. As for getting paid help, I can't imagine going to bed with someone in the next room standing guard over Barbara. And what would such a person do all night? There is no TV and most people would not want to read all that time. We don't have the physical set up for this and I just don't see how it would work.
Also, I don't want to interview people for such jobs. I would rather be worn down than face the psychological strain of hiring and firing — competence of that kind has always eluded me. (When I first came to Columbia, the head of the dept., Lo Woltjer, said he was going off for six weeks and was appointing me acting head. It happened that a new secretary had just been hired. On my second day in office, people came to me to say that the new secretary was a disaster and should be fired at once. Faced with this crisis, I fell into my family's way of dealing with such problems. I stayed home for the remainder of my term till Woltjer came back and did what needed to be done. I often wonder if avoidance of that unpleasantness was the cause of his departure.) Anyway, I'll go on as we are for a time, though Barbara is not making it easy. She does not like to curtail her activities and is too active when she is not sleeping. (She does sleep much of the time.) She has to be watched carefully and I hesitate to go and brush my teeth.
On Wednesday, B had some head pain. She had that two days before the seizure so that I am on red alert just now. We are on our own till the eleventh when we see the new radiation oncologist (Dr. Y. Yamada). We never met the last one since we did not make it to the appointment. These specialists are quite booked up so we were transferred to Dr. Y. The seizure has delayed treatment by at least two weeks. All in all, things have gone very slowly — the first sign of illness was on April 26. Anyway, 650 mg of Tylenol did away with the pain quickly as on the previous occasion. Then sister Mimi brought lunch for the two of them so that I could go and have the bandage on my wrist changed.
On Thursday, a nurse showed up to give Barbara an injection to slow her clotting rate. This was supposed to have been administered as part of the checkout process (as ordered by Dr. Omuro) but had been overlooked. The nurse expected us to have a prescription for the medication to be injected (Fragmin) but neither of us had been told of this nor given any prescription. So there was a flurry of calls and it was decided that the prescription would be phoned in to our local pharmacy. This may prompt another call from Medco such as the one we received on Tuesday evening that upset Barbara with their haranguing about patronizing them even if we needed the stuff fast. (We sent in for the pills for her chemotherapy over two weeks ago but so far none have arrived.) Another nurse is due tomorrow to inject the anticoagulation potion. So now it is tomorrow, that is, Friday. We expect a speech therapist at 11:30 and the nurse has announced arrival between 1 and 2. (Yesterday's nurse was intelligent and that was nice.)
Barbara seems weak. Her muscles have shrunk and she does not want to walk or exercise, though the physical therapist gave her some simple exercises to try. But that was before the seizure which seems to have been demoralizing. Anyway, it should be quiet weekend.
(I am afraid I am slipping into diary mode rather than keeping to just the facts. But I have not got the free time to edit this thing since B is now awake. At least I have not gone into the details of our plumbing problems.)
Thursday, August 5, 2010
For the hard of hearing
I was planning to get a new start with an ear doctor but, as it things turned out, I did not have the time. I had also planned to consecrate May to a grand spring cleaning and reorganization, but that did not happen either. The Tressers just came by and B did her best but it was a great struggle to meet this challenge, though they could not have been nicer. It all happened in a way that readers of Deaf Sentence would understand.
Can you find out how to get Ermentrout's program for solving ODEs?
If we could combine skype or a cell phone with HearingLoop.org, we could solve several problems...
consumercellular.com/aarp offers some hearing-aid compatible phones. No termination fees, phones are unlocked, etc. A review is here.
Predrag Aug 8, 2010 to Jean-Luc: Ed would like a cell phone, as long as he pays for it. Consumer Cellular seems to have some unhappy reviews on net. I'm now leaning toward jitterbug (read also squidoo blurb, see this jitterbug reseller)
See also hearinglosshelp.com
Don't do anything I would do.
Can you find out how to get Ermentrout's program for solving ODEs?
If we could combine skype or a cell phone with HearingLoop.org, we could solve several problems...
consumercellular.com/aarp offers some hearing-aid compatible phones. No termination fees, phones are unlocked, etc. A review is here.
Predrag Aug 8, 2010 to Jean-Luc: Ed would like a cell phone, as long as he pays for it. Consumer Cellular seems to have some unhappy reviews on net. I'm now leaning toward jitterbug (read also squidoo blurb, see this jitterbug reseller)
See also hearinglosshelp.com
Don't do anything I would do.
Electrical treatment plus TMZ clinical trial?
Sara to Ed:
The results cited in the `clinical experience' section of clinical trials with the NovoTTF-100A device do look promising, and it is quite positive that the side effects are so minimal. The treatment does not seem to be so toxic to healthy cells, and dermatitis at the electrode's site does not seem to be so bad compared to the side effects of radiation and chemotherapy.
The text indicates that the clinical trial is for glioblastoma multiforme, which is a grade IV astrocytoma. I thought that Barbara's diagnose was grade III. Also, they are looking for newly diagnosed patients (Barbara does fit into that requirement) that have completed radiation therapy concurrent with chemotherapy using TMZ (temozolomide). The control group will continue with the TMZ alone, while the group that is trying the new device will have the electrical fields together with the TMZ. The patients that are getting the new treatment will have to be seen twice a week for scalp shaving and electrode replacement. They talk about four electrodes, but do not describe the size. It is not clear whether shaving is needed only around the areas of electrode contact - I hope that this is the case.
The center associated with the study in NYC is Weill Cornell Medical College. The PI is Susan Pannullo, MD, and the contact is Euphael Henry, MD, 212-746-2438, euh2002@med.cornell.edu. Phil Gutin is one of the directors for this study, so it seems like a good idea to talk to him about this. The question is: what is the treatment that they plan for Barbara? Were they planning to do radiation together with TMZ chemo? If so, how long will it take? By then, will they still be accepting patients in this clinical trial? They plan to accept 283 patients, of which 2/3 will receive the electrical treatment plus TMZ, and the remaining 1/3 will receive only TMZ. Also, she would need to start treatment at least 4 weeks after but not more than 7 weeks from last dose of temozolomide taken during radiotherapy.
A lot of ifs, but it does seem like a promising treatment, and with little side effects. Results from the previous clinical trials are promising. I would say that it is worth asking Gutin about.
The results cited in the `clinical experience' section of clinical trials with the NovoTTF-100A device do look promising, and it is quite positive that the side effects are so minimal. The treatment does not seem to be so toxic to healthy cells, and dermatitis at the electrode's site does not seem to be so bad compared to the side effects of radiation and chemotherapy.
The text indicates that the clinical trial is for glioblastoma multiforme, which is a grade IV astrocytoma. I thought that Barbara's diagnose was grade III. Also, they are looking for newly diagnosed patients (Barbara does fit into that requirement) that have completed radiation therapy concurrent with chemotherapy using TMZ (temozolomide). The control group will continue with the TMZ alone, while the group that is trying the new device will have the electrical fields together with the TMZ. The patients that are getting the new treatment will have to be seen twice a week for scalp shaving and electrode replacement. They talk about four electrodes, but do not describe the size. It is not clear whether shaving is needed only around the areas of electrode contact - I hope that this is the case.
The center associated with the study in NYC is Weill Cornell Medical College. The PI is Susan Pannullo, MD, and the contact is Euphael Henry, MD, 212-746-2438, euh2002@med.cornell.edu. Phil Gutin is one of the directors for this study, so it seems like a good idea to talk to him about this. The question is: what is the treatment that they plan for Barbara? Were they planning to do radiation together with TMZ chemo? If so, how long will it take? By then, will they still be accepting patients in this clinical trial? They plan to accept 283 patients, of which 2/3 will receive the electrical treatment plus TMZ, and the remaining 1/3 will receive only TMZ. Also, she would need to start treatment at least 4 weeks after but not more than 7 weeks from last dose of temozolomide taken during radiotherapy.
A lot of ifs, but it does seem like a promising treatment, and with little side effects. Results from the previous clinical trials are promising. I would say that it is worth asking Gutin about.
Wednesday, August 4, 2010
Back home
We got back home last evening and I am having a tough time keeping
B's behavior safe and sane. She overestimates her stability, which is
not a good thing in her state. I put my exercise bike on side of the
bed and me on the other so she would not go off unassisted but, she
sneaks out at the foot. I don't even dare go to brush my teeth
without her going trying to go downstairs to see if the paper has
been delivered. She reasonably stable on her feet but there are
occasional glitches. It is a great strain.
Mimi watched for a couple of hours at lunch time while I went to get my wrist bandaged. Otherwise I am neglecting my graduate students and my doctors.
Mimi watched for a couple of hours at lunch time while I went to get my wrist bandaged. Otherwise I am neglecting my graduate students and my doctors.
Monday, August 2, 2010
The long haul
This afternoon we were told that they were considering releasing Barbara tomorrow.
She still sometimes loses the thread of conversations and her walking is unstable. She
does not listen to sensible suggestions by the nurse's aids or me. I am worried about the
procedure to follow. I think we should have someone watching her when I sleep and also
someone to look after her when I need to go out to shop or whatever. The hospital's canned
information is not very helpful. And I am not so good at arranging this kind of thing.
The date with radiation oncologist a Yamada is now Aug. 11.
Sunday, August 1, 2010
Jitterbug cell phone works now
And here is The Jitterbug Voice of Ed,
as transcribed by the Google Voice:
Hey brother said Hi in rang you. Just to tell you I sent you a bunch of joke. And I have to read it. But On this phone your rain sows wobbly. Is it by phone, or your phone. Those Walter, I don't know, anyway. We're Yes, heating, leftovers from last night. And we'll shortly. Go to the office for malicious. I will pay enough straining you too much, bye bye.
The aftermath
At 10:00 pm on Thursday, B got some oral phenobarbital and the next morning the
seizures were essentially over. (I say essentially because I heard some 'yes, but' in Dr.
Thai...'s account.) So the worst was over. However, she still was not speaking normally
and was saying some incomprehensible things and repeating them robotically. The next
morning (Friday, 7/30), she was set upon by a pair of therapists (one physical the other
occupational) who got her to sit in a chair and harangued her. In the midst of this activity
Dr. Omuro flew by on rounds and pleasantly told us that he was pleased with the progress.
He said let's get this cleared up so that we can get on with the treatment and get rid of
this thing, or words to that effect.
Then the EEG machine that was monitoring the seizures was disconnected on the
grounds that the seizures were over. Still I had the impression that they were exhibiting on/off intermittency but essentially in the off state. (There is a lot of dynamics there
that I do not understand at all and I am sorry that I don't know enough about all this
to report on it.) The processes of detaching the machine involved pulling off the patches
that were stuck to B's head. There were of the order of twenty of them and their removal
involved pulling hair and it got quite painful, though she remained silent through the ordeal. In the afternoon, B was moved from the surveillance ward to a normal room (with a roommate).
Now it is late on Sunday afternoon. Barbara had her first solid food today (she had
been on purees only) and is now sleeping a lot. They are talking about releasing her
though she is not thinking completely clearly and is becoming strong willed. I believe that
this is a result of being back on steroids that are given to reduce swelling. Apart from
various medical interventions, it has been a quiet day. The only worry is that B has not
yet gotten into her normal mental state, even that of the past couple of months. She is
slow to remember her last name and does not know the name of the hospital. But she can
converse and reads the newspaper. I suppose that we'll soon be able to meet Dr. Chan,
the radiation oncologist.
Subscribe to:
Posts (Atom)