Yesterday Kirsten underwent a PET scan and had blood samples drawn. Today we had appointments with Kirsten’s surgeon, Dr. MacGillivray, and her endocrinologist, Dr. Rockwell. The results were not surprising, and not good.
Dr. MacGillivray told us the PET scan revealed a tumor on Kirsten’s ilium (hip bone). They still do not know the primary source of the metastatic tumors, and therefore, how to best treat her for them. He referred us to an oncologist, and ordered radiological tests of the newly discovered tumor site. Feels like we’re playing a losing game of Whack-a-mole.
We did a bit of necessary shopping between appointments, and ate a nice long lunch at Ruby Tuesday’s. We met with Dr. Rockwell for an hour and a half this afternoon. She answered all of our many questions, which was very nice. She is pleased with Kirsten’s recovery and only made a few adjustments to Kirsten’s medications as a result of yesterday’s lab work. Some of the things she said were reassuring, like that many of the symptoms of Cushing’s symdrome will reverse. Most of the bad news simply isn’t news anymore. She ordered a bone density test so we would know just how deteriorated her bones are, and what might be done to build them back up.
Several times she commented on the complexity of Kirsten’s medical maladies, and agreed that somebody should describe her condition for an endocrinology journal. She said that at one point Kirsten had the highest levels of cortisol she has ever seen: 9,000 mcg/dL. Normal is 5-23 mcg/dL. The term she used is “metabolically deranged,” which I think is quite funny. She also agreed with Dr. Dolan, Kirsten’s neurologist, that the episodes of delirium and, possibly, her seizure, were caused by cortisol toxicity and resulting withdrawal following treatment in the hospital.
Again, I cannot adequately express my appreciation to those of you who have contributed to the campaign to help pay for Kirsten’s medical bills, and for the countless acts of generosity and kindness. Also, I would be remiss if I did not thank my new employer, Auto Europe, and especially to my boss for allowing me the time I need to take care of Kirsten. I am very grateful.