Today was the day we were supposed to receive confirmation of tomorrow's chemo. We took the 10 AM "heritage" walking tour of Historic Jonestown and Little Italy to occupy our morning then began calling the Research Nurse at John's Hopkins. By 3 PM, we still had no word. After many phone calls to the Medical Oncologist's assistants and schedulers, we determined that Ernie would not be having chemo tomorrow.
Words can not describe our disappointment. Right now we feel angry and mislead. Had we not elected the trial, Ernie would have at least one treatment under his belt by now. Selecting the clinical trial, we were told, would only add two days to the timeline. That has not proved to be true. In fact, we doubt now that he was ever on the schedule for today.
The Medical Oncologist finally called and said there is "a 90% chance" of chemo on Tuesday--still depending on the Ohio State biopsy results. Originally we were told that the testing had to be done within 5 days of receipt of the sample, so in our minds it should be a 100% chance. We don't understand the 90% but we are fearful of pushing the doctor too hard--don't want to bite the hand that feeds you as the saying goes.
Meanwhile, Ernie's symptoms are getting worse. It is painful for him to eat and he has to take painkillers to sleep at night. When he told the Medical Oncologist this today, she asked him to come back to the Multi-Disciplinary Clinic tomorrow so they could look at the tumor again. Hopefully, they will not find any significant changes and we will get this show on the road next week. It is always darkest before the dawn.
No comments:
Post a Comment