Stopping the drug abruptly can cause loss of appetite, upset stomach, vomiting, drowsiness, confusion, headache, fever, joint and muscle pain, peeling skin, and weight loss.So it is perhaps not unexpected that the drop from 8 to 0 had some adverse effect. At her physical therapy session on November 23 she was overcome by fatigue and unable to stand. She was put into bed and I could not rouse her for three hours, as reported in an earlier bulletin. Dr. Delosso ordered her an ambulance that delivered us back to MSKCC and to their Urgent Care unit. There, the decadron dose was augmented to 18 mg/day and Barbara's condition slowly improved. But not before she had been seen by doctors on rounds who found her speech problems difficult and her gait poor. These evaluations have an influence on the treatments that the doctors are willing to recommend. The opinions of the doctors were aired at their brain tumor conference on November 29 in the presence of the attending physicians of the department of neurosurgery, radiation oncology, neuro-oncology and neuroradiology. I hope it is not inappropriate to summarize their conclusions here (from a report by Dr. Delios):
Barbara Spiegel is a 72 year old woman diagnosed in May of 2010 with a left frontal astrocytoma , which was low grade on biopsy but behaved as high grade radiographically. She was treated with RT and Temodar that was completed on October 5th 2010 during an inpatient stay because of poor mobility. She did not have gross resection because of the tumor location. She now has global aphasia and poor gait despite VP shunt placement in September 2010. She was readmitted to the hospital from the nursing home because of lethargy that has improved after increase in steroids. Spine MRI shows a plaque of enhancement in the cervical spine. The Tumor Board recommendation was palliative care since the patient's overall condition and neurological debilitation precludes her from returning to live at home.[ I will not inflict my layman's opinions on you here. Yet I would like to report that when I asked how the the tumor had gone from low grade to hight grade in the six weeks (or so) between the two assessments, I was told that the tumor is heterogeneous. That I can believe. But what I don't understand is why the high grade part was not noticed on the extensive radiographic evidence available at the time of the biopsy. I think it more likely that the difference between the two evaluations was a result of a strong temporal variation. This suggests to me that prompter action would have led to an improved situation. After all, in early May, when Dr. Gutin saw the first MRI, he said, already back then that it looked like there was a glioma. ]
But now we are talking about early December. On the 2nd she could walk a bit and her efforts at speaking had increased noticeably. So we headed back to the rehab center on Hudson St. The trip from 67th St. to Hudson and 12th took 1 hr 40 min., which is a bit long by any standards. One reason was that the ambulance driver refused to listen to my suggestions about the route and preferred the instructions of the GPS whose route from the east side to the west of Manhattan by way of the Brooklyn Bridge. (Later investigation revealed that there is a Hudson Ave.) After the driver allowed me to get him back to Manhattan, he turned things over to the GPS again and we wandered around for quite a while. The other reason was that a wrong address had been entered into the GPS. But we finally got to 607 Hudson St.
On the evening of December 2, I realized that Barbara had not received any medications so inquired about this. The drugs had not been ordered on time and the pharmacy was closed. Not all of the prescribed medications were available at the nurses' station. I was very worried lest Barbara should miss her nightly decadron dose and her anti-seizure pills. So I went home to where I had some drugs left from the days when were staying there and managed to get back to Hudson St.by 8:00 p.m. (pill time in the center). One might think of complaining about all this if an exactly parallel event had not occurred at MSKCC as readers of the previous blurbs may recall.
The next day, Dec. 4, when turned to throw something into the waste paper basket, Barbara got up out of a wheel chair and walked toward me. Of course, she was not supposed to do that but it was good to see that she could. Still, this impetuosity shows that she is a danger to herself and has to be watched all the time. She has no hesitation in trying to climb out of bed whenever the urge strikes her. So we have had to hire companions who call for help as needed. We had such help on our previous stay here but, for various reasons, have used an agency to provide the companions this time.
Two days passed with Barbara in a good mood. She walked over one hundred feet using a walker and her speaking improved. Unfortunately, she speaks a bit too quietly for my poor hearing. Still, she chatted amiably with visitors on the weekend of Dec. 3 and things took on a rosy look. But on the following Monday she had grown morose and was hardly talking. She even admitted to being in a bad mood, something she never has done before in our fifty years together. On Tuesday, the 7th, she was in a slightly better mood but the fatigue was on her and even overcame her as she chatted with a visitor.
The fluctuations from day to day are not easy to understand and it may be that hospital life is just too depressing. The possibility of moving Barbara home has been gone over with various friends. The rehab center is moving to a new building on December 14th (we hear). I feel that we should wait and see what the new center is like before we make that difficult decision. Also the issue of whom to hire as caregivers is under discussion. There are rational arguments about that as well and I'll mention some aspects in the next report. But it is the irrational that weighs most with me since I seem to be able to make rational arguments for any of the points of view.
