After suffering from bloating and discomfort for 3 months, I had an appointment with my primary care physician on March 3. He diagnosed me with "Ascites", which is an abnormal collection of fluid in the abdomen, and is most often caused by chronic liver disease. He sent me to radiology for an ultrasound and it was estimated that I had 1-2 liters of fluid on my abdomen. He then put in a rush request for a paracentesis (aspiration of the fluid), and finally on March 9, the procedure was performed. It wasn't a particularly bad experience except for the needle in my gut to deaden the area. It was the most excruciating pain I've ever experienced. Once that was done, the rest of the procedure was a breeze and only took about 20 minutes to collect the 2.5 quarts of fluid which had collected.
When I asked the doctor what caused the fluid to build up, he said it was due to my carcinoid, but the info Danny found online pointed to liver problems, with cancer as a lesser cause. I asked if the fluid was likely to build up again, and he said it would. Little did I know that it would only take 3 weeks...I had the second procedure done today after school...the needle still hurt like crazy and I was so bloated and in so much pain that I just knew he would draw 3 quarts, but once again, it was 2.5 quarts. Right now I'm feeling a lot better. It was so bad this morning that I couldn't button my slacks...I had to wear wind pants to school!
In the meantime, Jessica turned 22 on the 13th, the day she left for Orlando on UCO's alternate spring break. They helped out at an organization that helps terminally ill children realize a wish. That week, I had an octreotide scan and various other lab work to check on the status of my cancer. When I met with my oncologist on the 25th to find out the results, I was blindsided with news that I had not expected...
All my tests came back good...nothing showed up on the octreotide scan, which according to my oncologist is somewhat a false positive. He suggested that the carcinoid may not have been releasing hormones which are detected by the scan. Further, the rest of the lab work indicated no change, which again, might mean that no hormones were being released and were not detected.
Due to the fluid building up in my abdomen and the results of the scans and tests, my oncologist feels that my carcinoid may not be the "slow-growing" kind, but rather a more aggressive type and he said I need chemo. Now, keep in mind that carcinoid is not typically affected by chemo, but in a state of shock, I went through the motions of setting up an appointment to begin treatment today. This diagnosis was made without the benefit of a PET scan, but he was to set that up for last week so the results would be in before chemo began.
My brother-in-law has cancer and had fluid build-up in his abdomen as well, and had to go through chemo, so Danny called his sister to get the scoop. She couldn't believe that all this had been set up without having done a PET scan. So we began to have our doubts. I had gotten copies of all the scan reports from my oncologist and faxed them to New Orleans along with a letter explaining the situation. The next business day, the doctor from New Orleans called me, and said that mine is a well-defined tumor that will not respond to chemo. He also suggested I make an appointment with my surgeon (Dr. Boudreaux) and the oncologist down there to get their opinions. Further, he refused to call my oncologist here to discuss my case because he tends to make people mad. (Not too impressed with that comment.)
Danny and I let it ride for about a week, and I had the epiphany that I do in fact need to go to New Orleans for an appointment. I called today and spoke with the nurse who is the doctor liason and explained that Dr. Woltering told me I needed to make an appointment with Dr. Boudreaux and the oncologist to discuss the fluid in my abdomen and my treatment. For the 2nd time in my life, a doctor's office refused to make an appointment for me. She said that there is a doctors meeting tomorrow morning and that she will bring up my case so they can discuss it. Also, I am to call her Wednesday after my PET scan (it finally got scheduled) with the name of the chemo the doctor here wants to use. Once I have the latest reports, I'm to send them down there to be looked at and they'll take it from there. She also suggested a water pill to help eliminate the build-up, but my oncologist didn't want me to take water pills (though I don't remember why---I was in a bit of shock when he gave me that bit of info).
I feel like I'm floating in space with nowhere to go and just don't know what to do. I want to know the cause of the Ascites so that can be fixed. I don't think I need chemo, but of course, I'm no expert...just someone going off her gut instinct. If it weren't for the Ascites, I would be feeling pretty great. Chemo scares me (even though Danny and I went the day after my diagnosis and bought 2 wigs) and I just don't want to go through it if it's not going to help me.
In closing, please say a prayer for me. I appreciate you!
