Wednesday evening and not all is well

Dear Family and Friends,
Nan has fallen on hard times again. Last night she had a temp of 101 most of the night. She was awake often and sometimes confused a bit, took her flashlight apart, could not find the cap for her water bottle and had other concerns. Our long 3 weeks of no fevers and no infections have passed. We also ran out of Adavan during the night. This morning I called Critical Care and Lisa, our pharmacist called me back. The blood work was pretty good, we are blessed with a hemoglobin of 9 up from 8.9 last week, white count was still low but had risen a point from its low of 9.5 last week, creatins were at 2.5 which for Nan is a typical number. I let Lisa know we were out of many supplies and by 2 this afternoon a delivery had arrived with everything we needed. The kind lady who comes from John Muir arrived to do her Nephrostomy Perk U Stays which is a huge ordeal for Nan as she has to turn on her sides while the work is done. The right one was all wet as it has been leaking urine for the past few hours and the left one had some blood but no fresh bleeding. The nurse also repacked the fistula and could see a small hole where the fluids are leaking through.
I emailed Alice this morning, she is at the oncology office. I asked her to please order some blood cultures and urine samples and have Terry do them here at the house. Later in the day Critical care called to say the doctor did not order the tests but wanted Terry to come assess Nan and then decide if cultures were needed. That did not really set well but then Dr. Melynk called as he was driving and talked a bit about whether it was warranted to have the tests or not. The more he talked the less comfortable I was with what he was saying. He said it was a poor place to have a conversation but did I think it would be helpful to have Erin go back to the hospital at all in the future, weren't we just prolonging her suffering. I reminded him that the last stay certainly was helpful, that they found and defeated two kinds of infection and she came home without fevers and feeling much better. He said he would order the tests and also have antibiotic sent out even before the results of the tests came back. So this evening we have a week supply of Zozan which goes in every 6 hours. Terry will come in the morning to take blood cultures and urine samples and hopefully all of this will help a very sick Nanny. She is alert enough to take her pills but not everything she says makes a great deal of sense. Most does. An hour ago she once again had a temp of 101. Her legs are wiggling wildly like they were last time when she had the infection and her faces moves from pale to flush and then back to pale. She mostly sleeps but is awake when she needs to be.
For me it has been a very trying day. I cancelled an appointment I had over in Emeryville and rescheduled for Friday so I could be near. I believe when the antibiotic starts to work she will feel better almost immediatelly. I think her left kidney is infected as she has been having pains in that side and area for a couple days. The nurse thought the urine looked cloudy too on that side.
Nan and I both do want to prolong her suffering but neither do we want to cease giving her the best available care and medical help. Her pain is well managed now so she is not in constant suffering like she once was, she is very weak and we don't know what God has in store for her. We will accept His will but we are not pleased with talk of removing anything that will help her survive medically until her body lets go on its own. I just can't tell you how upset I was after the phone call with our doctor of 11 years. I am considering seeing if her case can be transferred to another doctor within the practice. We want no heroics or artificial life support and we want no less than good medical treatment for treatable issues that come up. To not do so seems to be unprofessional and unkind.
To burn off some steam I decided to cook dinner, that is somewhat of a dangerous prospect. I found and prepared scalloped potatoes, warmed green beans (thanks to Marilyn Bitzer), opened cottage cheese and Marilyn found and baked some rolls. We had ourselves a great little meal. I was pleased and so was Marilyn. Then we had small pieces of cherry and cream pie (thanks to Pam).
A few minutes ago the delivery man arrived with the antibiotics as promised. Nan is resting in the blue leather recliner, the one we purchased on her way home from surgery #4 in San Ramon. Sharon was with us and we drove directly to the Lazy Boy showroom and nan proceeded to sit in about 10 different chairs until she found the one that was right for her. We bought it on the spot and it was delivered the next day. She has lived in that chair and its now my bed at nights. It has turned out to be sturdy, comfortable and still looks like new years later. Good choice honey.
What does tomorrow bring? I really don't know and I'm not even sure what tonight brings either. I will probably be up several times making sure her needs are met. Through all of this she remains kind, thoughtful, courageous and sort of calm. I know she is frightened, she wants the Nexavar to work and we really have no idea if it is or not.
I have made appointments out tomorrow but will cancel them in a moment if things are not looking better here. Even though nan does not often say much about having me near I know she has comfort when I am home. Marilyn has turned out to be a wonderful insightful care giver. She knows Nan so well at this point that she can predict things before they happen. She is really a gift from God and so kind and easy to work with. I keep thinking of how we can really thank her for what she is doing and so far I'm not coming up with the right answers. I know she got to talk to Barb and Gerry today, she knew Barb as the secretary of Central SDA Church when she and Walt were caretakers there many years ago. Barb is anxious that Marilyn get to visit them while she is on the west coast. Barb and Gerry are just back from roughing it in Hawaii for a few days and seem glad to be back with happy memories from being with Mike and Sandy.
Well I've gone on long enough. If Nan ever needed prayers it is now. Please keep her close to your heart. Remember the vivacious lady she was, go go go, plan, help, QVC, shop, energy to burn. She is still that same lady inside, just got sidelined with this nasty cancer. God knew what he was doing when he created Nan and I think we are all better and blessed because of her contributions.
We send our love,

tim and nan and marilyn