The word from Dr. Macaroni (not his real name) took a lot longer to get to us than we expected. Our Johns Hopkins Physician Assistant contact, Dawn, called last night. It turns out Dr. Macaroni was delayed abroad. Abroad was in Dubai, where he had been summoned to commit surgery and then wait until his patient recovered sufficiently to allow him to return. Apparently, Dubai and Johns Hopkins have a “relationship” and when Dubai calls, Johns Hopkins answers. I wonder what kind of insurance they have.
Dawn is wonderful about patiently explaining the latest finding and answering whatever questions we can think of as we listen and attempt to understand the details. There has in fact been a small amount of growth.
Tumor: 1 - Karen: 0.
Dr. Macaroni recommends that we continue to watch and wait for another 3-6 months to make sure that we have continued growth. As he told us in October, radiation is only effective on living, growing cells, so their “livingness” is important. Dawn explained that the tumor was still 3-4 mm. away from my brain stem. Well that reassured me. She seemed to feel that was fine. At least that makes one of us.
Dawn talked about what was going to be available in terms of various types of mysterious radiation machines, decommissioned ones, new ones, but that has yet to be needed and decided. Meanwhile, I have another few months to manage the symptoms, be grateful for how many good days or parts of days I have, and try other non-invasive alternatives. Stay tuned.
With love,
Karen
