Update 9-6-9

Hi,

When I was at the Medical Center getting my Octreotide injection this week, I got my lab results. The nurse has my whole chart there at that time, so I can see what both doctors have written, see my labs, read my surgical reports... I can do all kinds of cool stuff while we wait 45 minutes for the medication to arrive from the pharmacy. I have the delight of using a frozen drug; so we wait until the stuff thaws out and gets mixed up. Then the pharmacy technician shows up gently shaking the tube from side-to-side until the nurse takes it from her. It's a 5cc injection given in the hip and it's good for 28 days.

Anyway, my numbers are Chromogranin A 109; Gastrin 210. Gastrin is normal 0-100 and CgA is normal 0-50; so my numbers are a little over double the normal amount.

I will see my oncologist on the 22nd of September. If I don't hear from the surgeon's office by then, I will tell him about the EUS. Before then, I will email the PAC and ask about the procedure. I don't want to tell the oncologist that the surgeon's office slipping up. I would like to call before then, but I don't remember to call from work. I'm too busy with school stuff, and by time I get home everyone at the hospital is ending their shift.

I've noticed my attitude toward having another exam done has become that it's a nuisance to go through it again. Actually, the doctors might be finding my third tumor and getting it out of there. We know there is a tumor(s). It's just that i went through this twice during the last school year, and the doctors didn't find anything. I missed two days of work which uses up my sick leave.

This is different than the first tumor in spring 2008. Now I'm not in such a big hurry to find the tumor; I've been convinced that it won't make much difference if they do. If it's in the intestine, the doctors can remove it. It it's not there, I just keep taking medication. If the tumor is in the liver, the surgeon can't do anything unless the tumor is big enough to stick a needle into it. He says it needs to be about a centimeter before he can see it. Nothing the doctors can do will save my life, so it doesn't seem such an imperative to get tests done.

I have gotten my oncologist's attitude. There's not much we can do but manage my condition for as many years as possible. Carcinoid is a weird cancer. You may be OK until the time when your particular case flairs up, and then you go right down the tubes. But then, the docs can take out a foot or two of your intestine and you're good for another year. At least you're still alive--you might not be too good, but you're still here. Some patients take 10 or 15 years to die.