Glad this day is over!

Good evening friends and family,

I regret not getting this blog done earlier. Nan is finally resting comfortably now after a very disappointing day.
We got an early start at about 6:45 and Nan was feeling pretty good, after all today was the day she was to move to Youville and leave the hospital behind. We started to hear rumors that the medical team was not going to release her due to low blood pressure, we followed up on that and our nurse paged the doctor in charge, later he and Dr. Morgan came into our room and after a brief discussion agreed that Nan's blood pressure was really no different than it had been on many other days and the diloted had probably effected it in a negative manner. Nan and I walked a couple times around the floor and she felt good. She got a good breakfast of her Cream of Wheat, milk and I brought a muffin from McDonalds which she had some of. Dr. Morgan told us that she was to be on Gleevec and Rapamune starting the next day. All agreed that she could go to Youville. I left for the airport on the T to pick up Sharon who was flying in from Weslaco TX and to pick up a rental car. While I was there I got a call from Nan, she would not be moving to Youville until monday. They would not be ready to handle her new chemo drug until monday and they were concerned about the low blood pressure. So we lost 3 days of recovery due to missed communication between teams. It broke Nan's heart and just made me angry. Nan's blood pressure has run on the low side for years and if they were going to wait until she had higher blood pressure she would be in the hospital for ever, amazing but I finally calmed down and just had to accept the decision. Sharon was good and reminded me that God has led so far and He will continue to do so. Her faith and cheer are a wonderful addition to our little Merry Band here in room 16. Tonight we had pizza from the cafe downstairs and some terrible noodles and good green beans. Sharon rubbed Nan's legs, her back and really did a great job of cheering Nan up. Today Nan did her first email message back to someone, to Sandra and Troy in Texas, David and Sharon's son and daughter in law. They had sent a wonderful email with lots of news and family humor.
We stayed in Nan's room until about 7:30 and then Sharon began to fade, she had gotten up at 3 am this morning to get ready and to the plane. We had found a bed and breakfast place near Youville because we thought Nan would be there today. So I drove Sharon over to the Bed and Breakfast where she is staying, a nice victorian with a cute room for her, 15 rooms in all there. I will pick her up at 9 am in the morning since her cell phone does not work in the room at all.
Nan walked again this evening after her dinner and Sharon got to witness the energizer bunny, she just keeps going and going. We are all so proud of her and saddened that people were not able to get it together today so she could go where she was promised. Anyway we plan to enjoy our weekend here at the Brigham and Womens villas.
When Dr. Bertagnolli came to visit this evening she gave us permission to take Nan down to the cafe tomorrow in a wheel chair for dinner, in other words we got written permission for her to leave the floor. Nan has been confined to this floor for over a month, about 39 days I think. She needs to be able to expand her boundaries a bit. Dr. B was very impressed with Nan's condition and thinks she might be able to be free to travel by next friday, I sort of doubt that rehab will let her go that soon but we can begin to see the reality of leaving this place for a brief time in Conn with our dear friends and then homeward bound.
It is easy to forget just how far we have come, from Nan in a very fragile state to Nan is a very improved tumor free state. Even though we get upset with the pace of things and the missed communications between teams and hospitals we are very very grateful for their excellent work and care. We wish the food could be better and more interesting to temp Nan to eat more but even on that front we are making some progress. She had a couple of M&Ms today and crackers and cheese, some boost, some water, Cream of Wheat etc.
Nan has learned that if she lies down more level her blood pressure registers higher, one of the doctors told us that and its true. Sort of like drinking cold water before they take the temperature, not that she would ever do that.
After I left Sharon off and got her settled I set out to drive back to the hospital on Mass Ave. For the next hour I went in circles and could never find where Mass Ave. makes it big turn in Harvard Square but finally by watching the blimp over the game between the A's and the Red Sox at Fenway, using my watch which has a compass in it I made it back but not fast. God helped me get back but sure showed me a lot of Cambridge in the process. Tomorrow in the sunlight I'll watch carefully as I drive to pick up Sharon where Mass Av. makes it big turn and get this thing dialed. Nan wondered if I could find Sharon again, I sure hope so.
Nan wanted me to let you know how much she has appreciated all the cards we have received from you. She has read and reread them and the letters and comments as well. Thank you for helping the time pass in this room for Nan and for letting her know how much she means to her friends and family.
Well its 10:35 and I'm about to wrap this up and head to bed myself. Nan is awake right now but is able to sleep much better now than a week ago. Her colostomy output has slowed somewhat which is good and her blood pressure this evening was pretty good, better than this morning. They took away her heart monitor after a day of no events to notice.
At this point, Nan is receiving fluid through the IV and has a suction pump for the suction vaccum. That is her total treatment at this point plus some pills she takes from time to time. She is getting up by herself now, standing on her own, walking without the walker when she needs to, sitting down by herself, pulling herself up in the bed, doing the TV remote, keeping herself covered, rolling from side to side and is pretty much in control of everything once again.
We both want to send our hopes that your weekend will be special and that you will have time to hug each other, to do quiet and fun things together, visit something natural, park, river, forest, lake.
Our weather here has turned from rain to very warm sunshine. Our trip from the airport was eventful today since some of the tunnels have been closed due to shoddy workmanship during the construction. This is a union town with tons of graft and kickbacks, now they are discovering just how badly things were built and they have already spent 14 billion dollars to do what they have done so far. A huge expensive mess mostly paid by people from all over the county in their tax dollars yet it is controlled by a private agency. Republican Gov. Romney got control of the investigation today by pushing the dems at the statehouse to allow state inspectors to go over the books, inspect the hundreds of failing ceiling bolts and finally get to the bottom of the mess.
Makes you think twice when driving through and looking up and wondering if something is going to come down on your head.
Well I am going to wind this up. Another week, tremendous progress and we are learning patience bit by bit.
Please pray that God will be in control of all as Nan's recovery continues. We send our love and so wish we could be with you this weekend. Having Sharon here with us makes everything seem possible. Her infusion of financial help sure helps cover everyday stuff, how can we ever thank her enough for all she has done.
Good night and God bless you.
with love
tim and nan and sharon