As the party was taking place, Peter arrived. Peter came to the hospital today, because he and I made an appointment to speak with Julie Andrews. Julie is a Vice President at Georgetown and the head of patient advocacy. We wanted to go on the record with some of our concerns. It was a very productive meeting and Julie assured us if we write a letter to Dr. Draso (the CEO at Georgetown Hospital), that she will personally make sure the CEO receives it and will strongly encourage the CEO to respond to it. So Peter and I are compelled to write a passionate and well documented letter. This could all be for naught, but we feel that the HEM/ONC practice at Georgetown deserves the opportunity to be represented from the side of the consumer.
As I write this blog I am home tonight. Though I know Peter is very tired too, I can't function at this point. I need rest and I need sleep in order to get rid of this migraine headache. As the days continue on I realize I am getting weaker and without a break, I can't continue at this pace. I am sure Peter is not far behind. I am hoping a day away will give me the energy I need to continue on because this is a fight of a lifetime not just for a year. Mattie will get his second dosage of doxorubicin and cisplatin tonight. It is my hope that he will tolerate it well. The plan is that he will have 24 hours of post-chemo hydration on saturday and then be allowed home on sunday. Of course, by tuesday or wednesday I am being prepared for Mattie to become neutropenic. I am not sure Peter and I can handle another 11 days of a neutropenia admission. One thing is for certain, Mattie is coming back like gang busters, and Peter and I are dwindling. It is hard to manage his HIGH energy, and I think without being able to physically expend his energy, it is bouncing out of him in so many other directions.
I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote,"If anyone is an example of turning frustration into something positive it is you. The medical community as a whole needs a real wake up call for their part in keeping patients from getting well. Many physicians don't realize that their staff is a reflection of themselves; we judge them by how the people they hired treat us. I am truly sorry for what you experienced with your doctor's staff yesterday, as you said there is a wide divide between hearing someone and truly listening. The former is done with the ears and the latter with the heart. When someone who is supposed to be listening refuses to acknowledge what you are saying it is incredibly aggravating. Add pain into the mix and it can get explosive. I am glad you finally got to the doctor and were able to make yourself heard. I am amazed that the situation with admissions to Georgetown are still a problem. Unfortunately, you have run into a not so positive side of human nature; when no one is pushing, things tend to return to the status quo because that takes less thought and effort on the part of the person who is directing. I hope that since your patient advocate saw what was going on your next admission will be smoother. It is absurd to fill out the same forms over and over again within a very short period of time. I hope that some of the barriers to good patient care you have identified to the hospital administration are resolved and that better solutions take root in a lasting way."