June 11 and 12: We meet the patient advocate

The best development of the past two days was the meeting with RN Pat Gild who will work within the system as Karri's nurse advocate. She will interface with the insurance company, with the hospital, with the doctors, and she will research questions we have about Karri's condition and share it with us. Her services are being paid for by Karri's insurance but she doesn't work for the insurance company. She interviewed Karri, Jerry, Claude and Myrth about Karri's history with her illness, gathering information. She seems to be a very caring person and listened to us patiently as she asked questions. She will have access to the hospital records and we hope she will help us to understand the medical aspects better as the doctors are often too busy to explain things to our satisfaction.

Karri's overall condition is unchanged, and it isn't great. In addition to around the clock medication for unexplained back pain, she has now begun to throw up blood. The doctors are working to figure these things out but there don't appear to be clear cut answers. They suspect that the blood is actually the easier thing to fix and don't appear to be alarmed by it even though it is vile looking. They call it "coffee grounds," if that gives you the idea. The blood is due to the fact that her gastro tract has been so abused and stressed by all she has been through that it is now exhibiting signs of tearing. She is taking strong doses of antacids to combat this and today she had less of it come up than yesterday so we hope that trend will continue. This isn't something you want to happen to you - her teeth and gums and tongue are black as a result. She is brushing vigorously several times a day to try to keep it under control. The doctors have also come up with a temporary solution to the problem of the abdominal fluid production and they hope it will relieve some of her nausea and pain - they have inserted a tube that will allow the nurses to drain off the fluid as it is produced. The tube was inserted this evening and immediately drained off close to a half gallon of fluid. They continue to culture it and have ruled out liver or gall bladder issues as well as bowel damage. They continue to believe it is caused by the production of the cancer cells. Dr. Edraki also finally opened up Karri's wound packing and drained an abscess that has been contributing to the infection. We are relieved this has been done but wish he had done so much earlier, and we hope there are no more pockets of infected fluid in the wound areas. He indicated that no further surgery is anticipated, for which we are all grateful.

We hope that Karri's condition will continue to improve over the next few days and that they can begin chemo as scheduled within the next 10 days. We'll try to document her daily routine in the next post. She remains plucky and determined despite the fact that she is quite exhausted and weakened by all of these medical complications and from taking the regime of medications needed to treat them all.