"Who's in charge???"

The trip was nice. We didn't do too much. We checked into our hotel, had a late lunch at a deli less than a block away, and went back to the hotel for the remainder of the day. We liked the food at that deli so much that we had it for dinner too - delivered to our room this time. The next day, we thought we might go to Rockefeller Center for a view of the city or take a carriage ride but the weather was overcast and rainy and I was starting to feel flu-like. So after the doctor appt we ate lunch and went to the airport. Uneventful but nice. We'll see if we can do more if we need to go back for another appointment, and we'll take Katie with us. We haven't been anywhere - just the three of us - in a long time.

Tom had the most thorough exam that we can remember. Dr. DeAngelis's assistant, who is also a physician examined Tom from head to toe, asked one million and one questions, and recorded just as many notes. He was very good, very detailed. He did many tests using a pin prick and a vibrating instrument to determine where exactly Tom's numbness and pain were located. He did lots of mental tests like memory games and such. He also did visual and strength and coordination tests. He observed Tom's walking ability. He spent about an hour in the room with us. Then he took all of his notes to Dr. DeAngelis.

A while later he returned with Dr. DeAngelis - a very nice and professional woman - who immediately started asking quesions that we had a very difficult time answering. We had trouble recalling details from 2007 and 2008. She asked questions such as: In which month did this symptom begin? What about that symptom? What medications were you taking when such-and-such happened in Oct 2008? How many milligrams? Did you start feeling better? Who told you to take that medicine when such-and-such happend? Did you feel better or worse after such-and-such was done? Why did that doctor have you stop doing that? On what date were you told that you were in remission? Have the doctors told you that the donor's cells are completely grafted? When? What date did you have your last spinal tap? What happened when you started feeling like that? Which doctor saw you in the hospital in December 2007? On what date were you discharged? Were you able to walk at that point? When did you notice this symptom? Why are you currently taking that medicine? You mean one doctor told you to take this but another doctor told you to do that?

The whole time, in between answers she would look over at her assistant with these looks of astonishment, or confusion, or laugh a little, or with her jaw dropped open. She would intermittently make comments to him so low that we couldn't understand her. He would nod and/or take notes.

So many doctors names were mentioned that finally, she said "Who's in charge???" Tom and I looked at each other, a little relieved because finally someone was asking the same question that we having been asking ourselves for a long time. Tom told her that he wasn't sure and that he has felt like a football being punted around between them the whole time.

She put her hands up in a little frustration (not at us, at the doctors) and announced that she was going to start from scratch. She was going to order all new tests and images including a full body PET scan which is a 3-D, color image. All of these tests would be done in Atlanta and forwarded to her. She is also going to re-evaluate Tom's current medications as she feels that some of them are unnecessary and may actually be masking the problem. In other words, the steroids or the Lyrica (pain management medicine) may be hiding the symptoms of the real problem.

I asked her if she had any idea what the problem was and if she thought it might be cancer-related. She said she didn't know but that she would certainly find out. She gave me the impression that she was on a mission.

So, for now that's all we know. We don't know when we'll see her again. We really like her and we are hopeful once again.