Sunday morning

Dear Family and Friends,

Nan was awake when I came in at 7 this morning, had just "spit up" as she put it and needed a new gown. Althought she had been drinking water during the night the latest sip had sent her over an edge and she spit up spaghetti from last night. After we talked for a few minutes she tried more water and spit up more spaghetti. After that she felt better a bit and ask for a Boost over ice, she handled that fine. I tried to get her to sit up in a chair for a few but she said she'd rather sleep. Breakfast arrived, toasted bagel, fruit bowl, oatmeal but she didn't think she could handle it so I ate the oakmeal and fruit and she resumed sleeping. In my humble opinion her eye looks better today and her speech is more normal. She seems a bit stronger, is very discouraged but was visibly relieved to hear from Dana, that Dana is going to come out toward the end of the week after Jonathan starts school again. Having Dana with us will help a lot, we are both concerned about Nan being alone right now, her weakness along with our house being tri level means walking a bit from place to place and 3 steps between family and living rooms. Her main recliner is in the family room so that is home base when she is up.

Todays brief time of vomiting is less tramatic because she is on an IV, has received magnessium and potassium. So we just wait until this food slowly make its way through her GI. At home when she no longer can drink water she starts the dehydration process and gets quickly into trouble. I will try my best to get her up walking at least 3 times today and to sit up in her chair or recliner for awhile also. We are trying to remember the exercises that PT gave us in Boston as those helped a lot. I am wondering how much of what is going on is caused by the Gleevec, number one side effect is nausea, vomiting, diarrhea, loss of appetite, dry skin, hair loss and muscle cramps. She has most of those side effects right now. However the possibility that Gleevec could prevent the return of tumors more than offsets the side effects.

She seems more alert today but can't remember if she had any pain killers during the night or not. I think probably not. Dilautid is powerful stuff, how we wish we could still use tyneol but can't due to the Gleevec.

So I don't know what this week will look like. We are supposed to go to UCSF on Wednesday for a meet and greet with Dr. Warren, a oncology surgeon and friend of Dr. Bertagnolli, our surgeon. We hope we can keep that appointment as we need a surgeon friend on the west coast to keep an eye on Nan.

Medical issues right now include: green color in the dressing when we change the wet to dry, Carrol says not good so our nurse today says she will send a sample for a culture, that would be good. Other issues include: still vomiting occassionally in spite of the regulan and zophram, general sleepiness most of the time, slightly slurred speech, low energy levels etc.

We are both so tired of not knowing what happens next, of not being able to resume some sort of normal life. I had a hard time leaving the room last night so stayed til midnight. I felt very uneasy about her condition, just too many questions! not enough answers. I finally walked to the motorhome and upon arriving found ants had taken over the kitchen and I was overcome by fatique associated with my diabetes, I was still aware enough to know I had to get some food in so made a hot drink with chocolate, ate a banana and fell into bed fairly out of it, at 2 am a beeper woke me up, the battery in the motorhome was low enough so as it was not supporting my breathing machine. I finally woke enought to start the generator and let it run for awhile, that brought the battery back up and made it through the night without further incident. One thing I did not do before leaving home was check the water tank on board so I arrived with only a 1/4 tank which goes fast so very short showers, no dish washing and I'm back in the room to help Nan here. Now I'm not sure whether to drive home this afternoon or tonight or stay over another night. Work is piling up and its not so easy to make decisions about work vs Nan. In fact it is very hard when she seems to have so many needs and so little help here at the hospital. I empty her drains and bags, I make sure she had water and tea, I make sure her blankets are right, that she has warm clothes to wash up with, her toothbrush and water to clean out her mouth, run her back with lotion, make sure she walks, make sure she feels safe. We now change her wet to dry because they forget and we know how to do it much better than the different nurses do. Interesting times to be sure but I am so thankful that Nan is much better than she was 3 months ago when she had huge tumor masses and no hope of every getting rid of them.

Having company yesterday was just plain wonderful, it lifted our spirts and reminded us of other things, like vacations, game nights, seeing plays, taking trips, making plans, getting ideas, many times we hear people say I would call but I don't want to wake anybody up. Please, we can both go back to sleep, hearing a friendly normal voice means so much, its like a very good shot in the arm, in the soul.

Today while Nan sleeps I am going to try to get some work done. I have a full portable office right here with me, printer, computer, map creator, internet for data, I have it all right here so I hope to get some things done which have got to be finished for the good of our clients.

We sure need you right now. Somehow I thought once we got home that the recovery curve would continue until we were back on our feet, that has not been the case and we have regressed quite a bit in my opinion due to these vomiting complications. It is discouraging and downright scary to me, Nan is not so aware, just retreats into sleep but she still knows this is not what she expected to be happening.

I am going to write a report to our trial doctor at Dana Farber letting him know what we are experiencing and try to get his input on the situation.

Enough complaining! Thanks for including Nan in your prayers today. She is a precious person who had experienced so many of God's healing blessings, we just seek more and His will to be carried out.

We send our love from room 3117 here in Concord.

tim and nan