December 01, 2004- Tampa Trip Day One

Nancy, Lil Man, and I all got up early, took turns showering, got ready, had breakfast, and then left for the hospital. Aidan honestly seemed happy to have a "grandma" around.

We arrived at Moffitt around 9:40am (my appointment was at 10:15a) and Nancy dropped me off at the entrance so her and Lil Man could go do things while they waited for me. I went up the elevator to the second floor, checked in, fifteen minutes later was registered, and sat down to wait.

While I was waiting I called Nancy (Vin’s mom) to check on Lil Man. He was crying and mad at her because they were at the zoo and she made him sit in a stroller. LOL. He really loved looking at the monkeys though which was good.

I ended up sitting in the waiting room for an hour and a half! I was getting really ticked off and was about to start complaining when my pager went off and I was finally taken back to a room.

Got into an exam room, was weighed, had my BP taken (98/62), answered some questions, and then waited for the doctor. A few minutes later a med student/resident came in and asked me questions. She checked for swollen lymph nodes, examined me, asked more questions, and couldn’t seem to grasp the fact that I had TWO calcitonin tests done and my levels were at 24,000 NOT 16,000. She said that her and Dr LK would be back.

A few minutes later Dr LK came in and let the student/resident give him the rundown on the info she had gathered. Again she said my calcitonin levels were 16,000 and AGAIN I corrected her, she argued with me, and I let her have it! I told her “You DO know that after those first four pages there you have my WHOLE medical file from the beginning of this including ALL my test results and everything I’ve had done INCLUDING the second calcitonin test which was higher than the first". She looked a little upset at me but I was too busy looking at the doctor to see if he understood how ticked off I was getting.

They had my medical records in their hands for a full WEEK before I got there and do you know that not a single solitary person even bothered to look at them? They knew NOTHING about me when I sat down with them. NOTHING! If they had bothered to look at my records they could have scheduled all my testing while I was already there. Instead…… NOTHING!!

Dr LK asked me a question here and there and then showed me two of the CT scan films that showed my adrenal glands. He showed me where the tumors on my glands were and said he feels that those are the pheos. After that he examined me and then told me that they would remove both adrenal glands to get rid of the pheos, then they would cut or burn the tumors in the liver, and then do something about that one in the intestine. Of course, I will also still have to have the thyroid surgery as well.

He then told me that he treats to cure not for a quick fix so he expects me to be cured when we’re all done. From what I understand, you can’t be cured of this because of the MEN2a but it’s nice that he thinks so. He ordered another CT scan, Octreotide scan, and ALL the same bloodwork I’ve had done over again. Of course, our insurance won’t pay for another CT scan nor will they pay for all the bloodwork to be done again. :(

They wanted me to come back December 6, 7, and 8th for everything and a follow up appointment but I just couldn’t do it. There was no way I could have come back this week because Vin doesn’t get paid until Friday for one and there was no one to watch the kids while I was gone ANOTHER three days. I eventually had to settle for them to set up the testing on December 21 and 22 and then a follow up appointment on January 4th.