Friday afternoon report AMN is on its way!!

Dear Fellow GISTers, Family and Friends,

I am just back from taking a drive over to UCSF to deliver the CD of the CT scan taken this week. They called and requested it so Dr. Warren can have a much better idea of what he is facing as a surgeon if he should decide he can help Nan. Alisa called, she is his personal assistant and seems to be everywhere making things happen. I was glad for the follow up as we had faxed the written reports two days ago and heard nothing back. Silence in this case was not golden in my mind.

I called East Bay Oncology this morning again and this time spoke to Danna. She said that next Tuesday is the final meeting of a review board and Dr. Melynk expects the drug to arrive on Thursday from Novartis. She also said that someone in a research facility somewhere either at the doctors office or at the review board had spent 12 hours getting everything in order. Nan and I certainly appreciate the tremendous effort that has gone into this request. As non medical people looking in we have no idea of what is involved in the process or the hours that have been spent. Travis writing from Boston this morning mentioned a bit of the weight that each participant carries for Nan's well being as they move this compassionate use through the mountains of red tape. We will continue on Gleevec until we see the drug coming or at least hear for sure that it is coming by a certain day. We are supposed to have a 5 day window between drugs.

Doctors from oncology, kidney and infectious disease have been in. They have tackled the staph infection in the blood and it is being dealt with. They are going to allow us to keep taking the vancomiacin at home whenever that time comes. Neither Nan or I are anxious to leave this place with its constant loving care and safety. Yet there will be a time, probably over the weekend or perhaps next Monday when we will be released. Dana and Nan have cooked up a plan to leave here in the motorhome and drive directly to Jason and Jo's to see and care for baby Timothy. Of course we will have to coordinate with Jason and Jo to see if that will be helpful to them. The plan involves Dana sort of taking over where Julie has been helping, mainly the night duty and Nan getting to hold baby Timothy at times. Perhaps we can be helpful. Dana will drive the van so we will have a car if needed at any time.

We are taking things on a day by day basis here. Nan is in some pretty heavy duty pain and yesterday they upped the pain med, oxycontin from 60 mg to 80mg morning and night. Considering that Nan just had her first dose of Dilautid now at 4:30 since having it this morning at 9 am it is pretty clear that the higher dose of oxycontin is working. No one has explained yet to either of us why the increased pain but just guessing I would say tumor mass is pushing on nerves and taking up much needed space inside. Nan has been very clear in her conversations when she is awake today. She has spoken to not wanting to slip away while I am gone without getting to say goodbye. With all the doctor activity and discussions going on I think she has the impression that everyone has given up on any chance of recovery or coming through this. While her situation is very serious she has positive things going for her as well. Her hemoglobin is strong, her heart rate is normal, blood pressure is normal for her, creatines are now down to 2.5 which is good for her, infections are being dealt with and she can stand, walk and think clearly. Her lungs are clear, her bones seem to be strong, her basic organs are intact and functioning well. What we have are several tumors, some growing rapidly, that are causing havoc and pain. On the horizon is AMN and for the present is Gleevec with a possibility of Dr. Warren doing a surgery, that is certainly a last option and a very scary one for all.

We are grateful for many things, our good medical care, family support, friends and prayer pardners on duty, for no fevers and for little nausea. I believe we are doing everything we can do at this point to support Nan and help her. She is very much in God's hands and only He knows what lies ahead for us all. At times like these all of life's busyness, pursuing things, entertainment falls away and the basics become front and center. God has created a very special person in Nan, she has lived her life in service for her family, her friends, her fellow GISTers. She has been honest, kind, caring and hard working. She has created numerous times of joy around the dinner table or the Christmas tree or birthday packages. She has made trips to Hawaii happen for the family over and over again arranging every detail so no one had to worry. She has handled the finances paying bills on time and remembering so many different facts and figures in her head, it amazes me. She has purchased all the groceries, the clothes, the dog groomers, the fish tank, she has done it all never complaining, just making things happen. She was a very good appraiser with honestly as her benchmark, she was organized and kind to the homeowners. I often marvel that I been able to have this beautiful woman by my side through so many ups and downs, her loyalty unquestioned, her love treasured. She has taken me where she found me and backed me, prodded me and stood by me no matter what.

Husbands, take a few minutes and sit quietly, consider where your life would be without the person you love, your wife. Consider how blessed you are to have been on the receiving end of so much love and joy. Tell her until she actually believes you. Don't let another day go by assuming that she knows how you feel, tell her what makes her special to you, how blessed you are to have her give her life to you.

When one faces realities like we do right now nearly everything passes through your mind. And the things you remember are not when when you got to get a new dining room table or a new car or even a new house. The real things are moments of joy spent together watching the sunset over a Hawaii seascape, a hike through the high country, the moment of birth of your children, their graduations, their marriages, their children.

This week has been a rollorcoaster ride, moments of sanity, witnessing extreme pain, searching for hopeful moments, possibilites of recovery and hours of restful sleep, free from pain. Friends and family calling, visiting, loving and praying.


At this moment Nan is sleeping with soft moans coming through her sleep from the pain. She had hoped to sleep for a couple hours but so far not so good or deep.


Oh that God would heal her. What a blessing that would be. I am trying to do some work while she is asleep so I can devote my time to her full time when she wakes for awhile. But I really am not into working in spite of what I know needs to be done. People remind me to eat and care for myself but in doing so it seems so selfish, I can move about freely, eat what I want and drive places while Nan is stuck in the bed without options. I do appreciate friends helpful suggestions and I listen to every one of them, just don't always instantly comply. How nice it would be to take the dogs to the park again but that is time I can be here with Nan, how would you chose?


I have bent your ear long enough. We both appreciate your prayers very much. Over the weekend we hope to see someone, even for a few minutes, takes Nan's mind off her pain and down memory lane depending on who comes to call. We have good memories with all of you.


We send our love to each one of you. Things are not easy here but we are still doing everything we can to make it better and trusting God for His outcome.


love

tim and nan

ps. At this moment, 6:18 pm, we have developed a problem. Nan's right nephrostomy tube has stopped draining like it is supposed to and the back up is causing her great pain. Kathy changed the perk u stay which holds the tube in place as it comes out of the body and perhaps it got kinked inside or something. Anyway we have a big problem as it is causing Nan extreme pain on top of everything else. Not good.