Saturday hooky - planting sunflowers

Saturday morning and afternoon we played hooky in the backyard. We setup a flowerbed and planted sunflowers! R still tires easily so I tried to do all the hard work and make her sit, but she just can't be stopped from getting her hands dirty.

In her surgery last Friday the doctor removed malignant tissue from the maxillary sinus and cleaned out the sinus, but he held back from getting into her gums. We can feel the remaining mass in her cheek (small marble size) which is getting larger and harder each day (no it's not simply swelling).

By 3:00pm we got back to business and started going back over journal articles to understand the best course of treatment. The articles have some icky statistics - but they are also retrospective studies of patients in the 1980's and 1990's. We wrote down our questions about treatments and called our best advocates J and her husband Y. My wife R and J went to Nursing school together in the 1980's and J went on to become a Nurse Practitioner, along the way putting in ten years in Oncology/Hematology. J's husband is a Physicist who performs the final installation and testing of Radiology Therapy machines, and by coincidence is involved with installing a state-of-the-art Tomotherapy radiation machine at the same facility where I work.

These two not only have positive personalities and strong technical backgrounds, but they have contacts you wouldn't believe! By the time we called them in the evening it appears they had already done a full days work. In addition to answering our questions they provided information from cancer researchers they had located and e-mailed; data from internet searches; and data from a "SNUC" message board they had found and were mining for information. Unfortunately they have been through this process with their own family members and they seem determined to make sure that we leave no stone unturned, and we end up with the best care available! Two truly amazing people!

We end the day with a game plan to start setting up appointments at the University of Pennsylvania in Philadelphia and Sloan-Kettering, as well as a formal heads-up to our healthcare insurance company. Sunday will be a day of generating e-mails and letters to get the process going. Although a standard approach would be to wait for our local doctors to establish contacts at these facilities, we are taking the do-it-yourself approach.