Thanks everyone! I'm not out of the woods yet, but I'm pretty confident that I'll be OK, and if the cancer returns I'll call up my good friend Dr. Choti and as he told me "We'll do it all again and get you fixed up".
I'm a huge advocate for taking charge of one's own medical destiny now. But, I didn't use to be. I was never sick, and would go ten years at a time before seeing a doctor. When the cancer struck, I figured that most every doctor was qualified equally, and was very trusting. That changed early on during my testing....
I had to have a liver biopsy, where they put a sonogram-guided needle device into your liver and snap off a piece of the tumor so they can type it and confirm it. You have to be awake when this is done so you can hold your breath and not move when they are doing this procedure, and they take two samples five minutes apart. And lemme tell ya, its a lot more fun going to Disney World than doing this...
Though I didn't know it at the time, my particular rare cancer, called Carcinoid Cancer, does some funky things when it sets up shop in a person's liver. The tumors take over the natural production of the hormone Serotonin in your body, and they can increase its flow through the body. These tumors don't like to be disturbed, so if they are touched, they flood the body with massive amount of Serotonin, which makes a person's blood pressure bottom out. If your BP doesn't come back up, you die right then and there.
There is one very expensive drug made by Novartis called Sandostatin which blocks the flooding of this hormone and is mandatory for treating Carcinoid patients. It's $ 5,000 a dose and has to be pre-ordered from Novartis in advance - its not kept in a hospital pharmacy.
Well, you can guess what happened next. Right after the liver biopsy, I was in the recovery room and my wife was talking to me and I passed out. My blood pressure bottomed out as I slumped over on the gurney. The medical staff had no idea what was happening but it was a Seratonin flood from the disturbed tumors. My wife told me I was blacked out for about four minutes. At a place where they know what they are doing, they can give a patient a 'rescue shot" of Sandostatin if they have it on hand and the knowledge to use it. Of course, there was none at where a I was, nor the smarts of anyone to use it if there had been. I eventually came to on my own as my BP came back up after the attack. The doctor at Innova Fairfax Hospital who did the biopsy told me that it was probably because I had not eaten since the previous evening and gave me some orange juice to drink. He was clueless.
I returned home and spent hours researching my cancer on the internet, and discovered that they had made a huge medical faux pas by not having me on a Sandostatin I.V. drip during the biopsy procedure, and when I called that doctor's office they were not interested in hearing my opinions of what I had found out.
That's when I became my own medical advocate, and got hard on my assigned physicians. I could right a book on my cancer experiences and how I challenged the medical system every step of the way and their treatment protocols until I finally got to Johns Hopkins where they know what they're doing. I was not real popular as a patient after that, but I would never again let them do an invasive procedure on my without having a Sandostatin does on hand and that caused some sparks because of the cost of the medicine.
One day I'll tell you the story about how I fired my (HMO-assigned) cancer surgeon.
Duane Collie
Straight answers from thirty-six years in the business.
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