My 10-year-old daughter rode with me from Manhattan Beach to Oxnard along PCH 1. It was a beautiful drive. We spent a few days at a friend's beach house and then drove on to Bakersfield where my parents live.
My car overheated on the drive, but we were able to make it all the way and stop at a Firestone (I knew where it was already from previous experience). After several hours of waiting and attempting to rehydrate ourselves, all the car needed was a new cap to the radiator. The seal on the old one had gone bad and with all of the heat, the fluid in the radiator had evaporated.
After this experience, we finally made it to my parent's home where I received a phone call from UCLA. It was the anesthesiologist and she was calling to ask me the usual questions about my health, previous experiences with anesthesia and that kind of thing. While I was on the phone with her, another call came in, but I didn't check to see who it was. I felt this current call was pretty important and whoever else was calling could just leave a message. He did.
After feeling pretty confident about my prospects for surgery a week later, I checked the message left on my cell phone. It was the surgeon's office. Dr. Marvin Bergsneider's assistant called to let me know that the coordinating physician, Dr. Anthony Heaney had cancelled the surgery and said I needed further testing. He wanted me to have a CT of the chest, abdomen, and pelvic areas, as well as a radioactive test done in Nuclear Medicine. I hadn't heard the results of my IPSS yet. I hadn't been to a computer all day to check my email (I had agreed to communicate with my doctors via email).
I was pretty educated about Cushing's Disease and Syndrome. I knew what this meant.
I did not have Cushing's Disease. I had Cushing's Syndrome caused by what is known as an ectopic ACTH. This means a tumor somewhere else in my body, not the pituitary, is secreting the hormone ACTH and causing me to have all the symptoms I was experiencing. Also, these tumors are most typically cancerous.
I lost it.
Another draw back.
More testing.
More time.
More questions.
Panic.
Anger.
Frustration.
Sadness.
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