I got to Hudson St. at 5:45 or so and found that Barbara was awake and had been dressed, except for her shoes, by Shelly the night caregiver. Mimi had dropped off a couple of croissants and four mandarins (or tangerines as they were called in the Bronx back when) on the previous evening. So we had a light breakfast and settled back to await departure in the car I had ordered for 7:45. Hyacinth, the day care person arrived somewhat after seven at around the same time as the institutional breakfast and insisted on feeding this to Barbara. I was not in favor of all that eating but H. has been getting more and more obdurate and pressed on with the cream of wheat and omelet. I suspect that many people in her profession are in the habit of helping moribund patients and are not able to adapt to caring for thinking entities.
Steve C. then came over to help and went downstairs to wait for the hired car. Annie, a leader of the caregiving consortium came in to direct just as Steve came back to report that the car had arrived. There were too many cooks brewing but we finally got Barbara downstairs in her wheel chair and into the car. Getting the wheel chair into the trunk was a bit harder than getting Barbara into the car because of the additional contribution of the driver. The weather was not helpful with the temperature in the twenties (F) but we got to 53rd St. in good time and settled into the sumptuous waiting room to await the call. (Fruit juices, coffee, tea and chocolate were the available beverages and the snacks were graham crackers and pretzels.) I was disappointed to find that Barbara was not wearing the corduroy jacket we had had in mind for this outing but such things were to be expected with everyone pulling in a different direction.
At last we were greeted by the pleasant receptionist whom we had seen previously. After we had inquired politely how she had done in the NY marathon, she led us into an examination room to await examination. But before the fateful meeting there came the obligatory brief interrogation by the highly competent onco-nurse. Finally, Dr. Omuro himself joined us.
Perfunctory greetings having been exchanged, I reported that Barbara in the past few days has been sorely burdened by fatigue and has slept through visits by various friends. Nevertheless, she had carried on some pleasant conversations that Judy V. found enjoyable and that Diana C. called amazing. Dr. O. was not impressed and preferred to test Barbara's conversational skills with some straightforward questions such "What is this?" or "Who is that?" Barbara's response to these was to smile and shake her head. This gave Dr. O. a bad impression of her cognition. He also felt that her walking ability had not improved much since our last visit.
These perceptions gave him a dim view of our prospects, which he revealed to me when we had repaired to a nearby small office to confer. I can only imagine what Barbara thought our leaving the room meant. And she would have been right. The doctor told me that if Barbara stayed where she is, she probably cannot have further treatment since the rehab center would be financially responsible for this and it is expensive. Since she is an inpatient, they would not be allowed to let me pay for the treatment and perhaps they would not want to in any case. (On our return to the rehab center, I asked Michael, the social worker about this, and he said that he would inquire with the financial department. I have had no word as yet.) Likewise, were she in hospice care, further treatment would be precluded as well. It appears that only if she were at home would she be eligible for treatment. And doctor O. felt that it would be dangerous for her to be at home in her condition. I don't know if I agree with his assessment but, in any case, I would like to get a better staff of caregivers in place before taking Barbara home with them. The lack of any medical personnel is something I worry about.
The possible treatments Dr. O. discussed with me were Avastin or a combination of Avastin and TMZ. These are discussed separately in the in the earlier bulletins and are also described in Wikipedia and some Google sources. But the doctor did point out the possible adverse side effects of Avastin (such as kidney problems) especially for people in Barbara's age group.
He left me impression that he was meeting us only because he had been pressed to so. He was apparently aware of my inquiries with Dr. Posner (reported in earlier bulletins) and was offering me all possible options except that of an understanding inquiry into Barbara's condition.
In the evening with Barbara ensconced in her new bed, I was drawn out, against my better judgement on all this within hearing of a deeply sleeping Barbara. Does she take such things in subconsciously? At any rate, as we were getting her into bed for the night somewhat later, she looked for her coat and spoke of the 'hood.' I finally realized that she meant 'hood' -home, in effect- not the hood on her coat. She wanted to go home, whereas two days ago she had replied ambivalently to a question about whether she wanted this. I must reconsider the options. The new building has lived up to my expectations of a clean well-lit place that should provide a morale raising milieu. But it is not a home even with me present during almost all of Barbara's waking hours?
The truth is that I still would like to get some treatment for Barbara. It may be a selfish wish but I think it only natural. Yet for every piece of advice encouraging this wish, I have received an equally reasonable discouraging one. On the other hand, I am not happy with Dr. O.'s assessments. On Thursday, two days after most of this bulletin was written, Sharon, the physical therapist, took Barbara walking. She was able to trudge along unsupported for a good distance (100 ft. or more), though she was carefully watched. Not only was her walking much better than Dr. O. could get her to perform, but her speech has been impressive. Tracy, the speech therapist managed to fit in a brief session on the afternoon of moving day (Tuesday) and reported that Barbara was speaking well. Then two days after our meeting with Dr. O., we saw Dr. David at the Rusk Rehabilitation Center for a standard follow up to our stay there about a month ago. Dr. David also asked Barbara direct questions, including some of the ones that Dr. O. asked and Barbara answered them easily. Yet, Dr. O. does get her to clam up when asking the same sorts of questions.
My problem is not with with the procedures per se. It is that I do not is how much the (to me) unsympathetic examination procedures Barbara submits to at MSKCC influence the treatments (or lack of them) that are on offer. After all, some members of the tumor team have not seen Barbara at all and their opinions are formed on the basis of second hand information based on this kind of examination.
[ Here is a letter from Karl Lauby, Vice President for Communications, The New York Botanical Garden, a fellow chorister of Barbara's and a loyal friend, to a friend of his after he lost his wife to ovarian cancer. Karl has kindly allowed me to include this excerpt from his letter though we both understand that anecdotes about ovarian cancer may not bear directly on what happens with brain tumors. ]
From: "Lauby, Karl"
Subject: Lila and Avastin with Cytoxan
Ed, Here is Lila's Avastin Cytoxan experience as indicated by the numbers below. Different cancer, different person, all different. In any case, this was one patients experience.
I guess all the fuss in the popular press about Avastin and some chemo combination, (a cocktail, right?) is about the variation that Lila received that led to this dramatic drop in her CA 125 I recorded in June 2008. According to my notes, that went on six months to January 2009. Then we tried weekly taxal. Then we tried the trial at MSKCC which did not work and things went downhill. So it appears to me Lila got a little more than the reported average of four months from this Avastin combination. (I assume cytoxan is form of close to standard chemo theapy.) I just wish we had not started to slide in the summer of 2009. I guess the nature of Stage IV ovarian is that the slide starts sometime. Just wish we could have kept on the level longer.
