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.]
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