I will now attempt to share with you what has been going on in the past few weeks. It will be long. You will be confused. You will be sad. You will also be encouraged. So here it goes.
After meeting with Dr. Biggers, Steph had a meeting with Dr. Hoos. He said he didn't think the PET scan would be necessary, but if she moves on to St. Louis, they would probably want it so "go ahead if you want." She then asked to be referred on to a surgeon in St. Louis and he obliged. Meanwhile, Dr. Biggers is still VERY concerned that she has not been tested for Lynch Syndrome or anything else genetic. She informed him that she HAS in fact been tested for that stuff TWICE. And guess what...when he called the ONLY genetic counselor in Springfield....she had NO record of even seeing Steph. She was also tested in Houston. The tests came back negative again, but they weren't so sure so they requested more information. This would come in the form of a 25 page questionnaire. Questions like, "What and how many times did you eat as a baby,"caused her to push that one aside and never look at it again. That has guinea pig written all over it!
SO, Dr. Hoos referred her to Dr. Chapman in St. Louis. After doing her own research she found that this man specializes in LIVERS!! She called and spoke with his nurse (who said, "Oh, I have your scans right here that you need to pick up to take to St. Louis!" Good thing she called!) to explain that she did not want to waste her time driving to St. Louis to see a doctor that couldn't help her. She was very understanding and assured Steph that the doctor himself would be calling her back before the day's end. At 4:30 she had heard nothing so she left practice that day and drove straight to St. Johns. She walked in without an appointment and in a very nice way insisted that she speak with Dr. Hoos. He explained to her that her scan revealed "more cancer deep within her abdomen." He then assured her that she was going to the right doctor. I don't think I need to tell you how devastating that news was...for everyone.
Steph, Scot, my mom and the boys FINALLY got out of town and headed to the hotel. The next morning was her appointment which they originally thought would be a simple meeting to discuss surgery options. However after talking more about it they decided that they boys did NOT need to be in the office, given the news she had received the day before. So they called dear Aunt Jackie who lives in St. Louis and dropped EVERYTHING to be there. She and Uncle Jerry were at Siteman Cancer Center before Steph was! She sat with the boys while Scot and my mom accompanied Steph. They gave Dr. Chapman the stack of scans and he went to his office to look them over. He came back and said that the scan from December 22, 2009 was not there. He would absolutely have to see this scan in order to compare it to the PET scan from the previous week. Without it, he really couldn't say much. So I guess you would call that...A WASTED TRIP!!!!!!! Oh yeah, he also told her he would look at the scan and most likely refer her on to a different surgeon, you know, one who specializes in the colon.
Everyone came home very confused. Steph called and talked with the nurse about the missing scan. She apologized and said that they request their scans from another department and she wasn't sure how many scans were supposed to be there, so she didn't realize it was missing. Steph said she would send JL (Scot's dad) up for the scan so he could mail it. She told Steph that she would take care of it and get it to St. Louis by Friday. Scot called Steph on Friday and told her that the scan had arrived...AT THEIR HOME!!! JL went up to St. John's in hopes he would find that they had just sent a copy to their house. No such luck. He then mailed it HIMSELF to St. Louis. Now here we are. Today. I just got an e-mail from Steph. Here is what it says.
Going to STL tomorrow. Don't have appt time yet, but should get it this afternoon. The (liver) doctor that I saw last week spoke with me today and said he thinks I would be a candidate for the surgery to have the pelvic tumor as well as the abdominal tumors removed. Pray that he is right! I really think if I can just start with a clean slate I can beat this thing.
Isn't she amazing?