Another MRI

On the afternoon of Nov. 2 after my meeting with the staff on Hudson St. [see previous bulletin], we got organized to go uptown for an MRI at 66th St. followed by an interview with Dr. Omuro. We got Barbara into warm clothes (it was a nippy day) and were just about to leave for uptown at 1:15 when a visitor appeared. She said that she was from the Rusk Rehab Center on 34th St. and that she was there to follow up on Barbara's condition. She is supposed to see Barbara every week, though this was news to us and was typical of the surprises we have had over the duration of B's illness. (Last week, her son was sick so she had not turned up.) The timing was wrong as we had to leave and not much information was exchanged. So off we went with Barbara in a wheel chair and Carla (one of the daughters mentioned in the last bulletin) to catch a cab on the street to the newest MSKCC campus on 66th St. and 2nd Ave. After a bit of fi ddling to get the wheel chair into the trunk of the cab, we were on our way.

Though we were quite early for our appointment, the MRI was not done on schedule and so we were late for our appointment with Dr. Omuro on 53rd St. We needed a cab to get from 66th St. and 2nd Ave to 53rd St. and 3rd Ave., which was not easy to fi nd around there at 5:15. But we wheeled a few blocks and got one. (We had phoned ahead to report that we would be late.) The nice assistant (receptionist?) remembered Barbara, greeted her warmly, and spoke of her plans to run in the NY marathon. Then a high level nurse asked us for details about Barbara's condition. And we were left alone for a while to await the appearance of Dr. O.

When Dr. O. came in, he did his best to display some humanity as he asked the usual questions. He got Barbara to stand and to walk a few steps and announced that she was walking better than when he had last seen her about a month previously, at the conclusion of her treatment. He seemed surprised about this, it occurred to me. Perhaps he was relying too much on the MRI, which he must have seen already. Then he tried her on speech. He asked what the date was and she smiled and said she did not know. I know lots of people walking around at large who would not know either. But, after a few such questions, whose answers she did not know, he pronounced her speech proficiency unimproved. He made no allowance for the facts that she had had two harrowing taxi rides, a lengthy stretch in radiology and that his manner was not soothing (to either of us). He felt that her speech problem would not improve and that this was a bad symptom. (For more on this issue please look at www.nidcd.nih.gov/health/voice/aphasia.html) He then called me into another room and said that the MRI showed no improvement in the tumor and that he felt that the treatment had not helped. He therefore suggested not giving more treatment and that we should consider hospice care. He had clearly looked at the MRI before seeing us and, I surmised, had made up his mind about the prognosis already. He did not off er to show me the latest MRI and I was too numb with grief to ask.

[ Intermezzo: On hearing my report of Tuesday's happenings, Doris Baker kindly o ffered to ask a doctor she knows at MSKCC to look into the matter and report his conclusions to me. I received a gracious letter from his assistant and a note from him summarizing his confi rmation of the report by Dr. O. concerning Barbara's diff use astrocytoma. (It became `dif use' during the two months it took to diagnose a tumor at NYU and MSKCC.) He also mentioned that she had been called completely aphasic.

I answered, somewhat intemperately, as follows:

My thanks to Dr. Posner for his trouble.
While I do not dispute the diagnosis stated I would like to point out that the conclusion that the patient is aphasic was made on the basis a couple of prefunctorily off ered questions to which the reply given was "I don't know." But the examination was conducted after the patient had been through a longish taxi ride through traffi c, a long session in a waiting room followed by an MRI scan lasting nearly an hour, a struggle for a taxi at 5:15 on 3rd Avenue and another passage in a waiting room. I know people who might have failed such a test who are distinguished members of learned professions.
On the next day, staff members in the rehab center were commenting on a witty remark the patient had made.
Moreover, I was not off ered a look at the scan but I imagine that it had something to do with the conclusion that must have been reached before the examination since it made no appearance during our presence.
I hope that not all your diagnoses are reached in such a cavalier manner.
Sincerely,

Then, under orders from Predrag and others, I added this foolishness:

Edward A. Spiegel Lewis Morris Rutherfurd Professor of Astronomy, Emeritus, Columbia University

Ever gracious, the good doctor responded that, having not seen the patient, he could not comment on the degree of aphasia but that symptoms of of tumors are intermittent (not his word). But, he added, there is extensive tumor shown in the MRI. ]

At that point in the examination, I turned to the question of trying cannabinoids which are considered palliative and which some investigators suspect may cause tumors to shrink. He brushed the whole subject aside saying, in eff ect, that at MSKCC everything is known and that there is nothing to this notion of the good eff ects of cannabinoids. I had with me a copy of a short one-paragraph letter from Alice W. that reported that her doctor had said that tetrohydrocannabinol (a.k.a. Malinol) is apparently harmless and might be beneffi cial in such cases. He refused to read that short paragraph, which came from the Stanford Medical School. So back downtown we went, tired but unhappy.

On the next day, I spoke to the nurse practitioner at the rehab center who had been on top of the situation from our arrival at VillageCare Rehab Center. I asked about malinol and she said that it is routinely used to stimulate appetite. She off ered to use it for Barbara instead of the appetite stimulator that she was already using. So all my worrying about getting someone to prescribe malinol for us was unnecessary.

Barbara was still quite tired on the following day but, on the day after that, she was more alert. She did well in physical therapy and her p.t. therapist, her speech therapist and Diana Childress each commented that her speech was improved. This is good news. But what now?