I’m about 90% sure that I will move for this next phase from NYU Langone to Memorial Sloan Kettering. Still waiting to speak to Dr. Chi, but after yesterday’s visit and today speaking with Thelma St. Victor from Dr. Chi’s office as well as spending an hour with Dr. Silverman, I’ve all but made up my mind.
Both Thelma and Dr. Silverman could not have been more supportive of the idea and both offered whatever help it will take to make the transition as smooth as possible, including speaking with Dr. DeAngelis and her team. As it turns out, Dr. Silverman said he had trained under her and she inspired him to work in radiation oncology. He praised her as probably the best person in the field of neurology focusing on the brain. When I mentioned that she doesn’t think that further radiation is the way to go, he said he respects her judgment, though I will ask her if the possible benefits are worth an extra edge of caution, even if there are side effects like fatigue. And he said that though he is not an oncologist, he supports the idea of immunotherapy or chemo with the Avastin to relieve the side effects. He explained that I have multi-focal tumors which means the tumors are somewhat discreet in several places in my brain, but that they have not metastasized from other parts of my body or all through my brain, so that is “good.”
He also told me that he feels that I am doing better neurologically than the slides seem to show, meaning that while I do continue to have fatigue, I get up and do things; many people with my condition just sit at home all day and don’t keep active. While I may not see myself as so active in the sense of doing much less than in my pre-tumor days and with less energy and joy, many people in my age group and with my neurologic presentation would be delighted to do what I do – gym, even if in small doses and not everyday; going to the theater, movies, meeting friends, even if in smaller groups and for limited periods of time; going to the beach, even if I don’t do my 2 hour walks, etc…. I have few cognitive changes, such as judgment, reasoning, memory, and language. I have few cognitive changes, such as in judgment, reasoning, memory, and language. Also no significant impaired motor function and emotional and personality changes.
Dr. Silverman noted that there is an excellent a board-certified radiation oncologist who specializes in treating brain tumor at Sloan, Kathryn Beal, He has a collegial relationship with her and offered to work with her as needed for any transition.
Dr. Silverman had come in to see me on a vacation day, so it was clear that he is dedicated to his patients. He felt that delaying the next phase of treatment would not be a good idea, so I need to make the decision who to work with and what to do very soon. For this I will be in touch with Dr. DeAngelis. But for now, I’m taking the weekend off and heading to Fire Island for some rest and relaxation.
By the way, Kathleen continues to light those candles for me – and more than ever, I need the light! Here is one in the strikingly modern Cathedral of Saint Mary of the Assumption in San Francisco!