Topic: Intro to Me
Good morning all,
I have been reading this forum for a few months now and have truly appreciated everyone's information. It has helped me quite a bit. I was diagnosed with intra-hepatic cholangiocarcinoma on 12/29/06. My wonderful husband and I had gone to Florida for a cruise last November and I was feeling terrible. We ended up getting off the ship before it even left dock and I spent 4 days in the Broward General Medical Center (instead of on the Carribean!!!) for what they believed to be cardiac related issues. While there, they ran an ultrasound thinking maybe it was my gallbladder. Well, in the long run, it actually WAS my gallbladder, but they also found a mass in my liver, and my heart is fine (thank goodness). They did a CT scan but decided it was a hemangioma. After getting back home and seeing a cariologist, a gastro-enterologist, having many CT scans and MRI's and two liver biopsies (the first was a liver biopsy only, the second was for the liver tumor only), I was finally diagnosed on 12/29/06. Happy new year!!
My wonderful sister-in-law works with a family doctor and the two of them had taken over as my advocates to get all of this testing done. The GI had an MRCP done, and ended up sending me straight to a surgeon to have my gallbladder out. He had dropped it...as far as he was concerned, that was my problem. My SIL's doc pushed for the second liver biopsy only three weeks after the first and it was finally diagnosed. She is that one who had to call me to give me the news. As hard as it was for me to hear it, I can't imagine how hard it was for her to tell me.
Thru her dotor, I was referred to IU Med Center here in Indianapolis and I found the perfect doctor. She is a gastroenterologist/oncologist/surgeon and specializes in the liver. Can you imagine???
Now, I am not stupid, and I am pretty computer savvy. I had done my research and knew the background on CC. And I was scared...to...death. I was dying. I'm 49, and I was dying...until the moment she walked into the room that day and immediately told us she could take it out. WHAT??? She had handed me back my life, at least for a while.
Surgery was 01/29/07 at IU. Only 4 weeks from diagnosis. It felt like 4 years. But I never hesitated, I knew I had to do it. And trust me, it wasn't easy. I had a right hepatic lobectomy and a cholesystectomy (gallbaldder removal) and was in the hospital for 9 days. I was home for 9 days and then back in for 4 days, for dehydration, nauseau and diahrrea, but have been getting steadily stonger and other than that old familiar abdominal pain, I probably feel better than I have in years.
I went back to work at 3 1/2 months. I did work part time for 3 weeks while I finished up physical therapy, but have been going strong ever since (ok, with a few naps every now and then). I did not have any chemo. I sit in front of a computer all day, and the soreness in my abdomen can get pretty bad. They say it's normal. I have to believe them.
Sorry that this is so long, but here's the real reason for my post: I am still scared. My husband, God love him, would do anything he could to make this all better. He has been so strong and has been with me every single step of the way. But, I don't think he understand how much this is on my mind. All day, some days. I try so hard to live in the "One day at a time" mode, but some days it is so overwhelming. I have a wonderful prognosis according to my doctor, the best you can have...it was found fairly early (the tumor was already 5.7 cm, so it wasn't REAL early) but she was able to get clear margins (sorta). The part that really scares me is that the tumor had already grown to the edge of my liver, so all those little cells were free to make a break for it and run off to hide somewhere else. I know my way around a computer and the web, and I read so much about clear margins and recurrence. I keep waiting for the other shoe to drop.
I had my first follow up CT scan on 06/08/07 and it looked good. My labs looked "okay" too.
Thanks so much for reading this and listening. I pray for anyone and everyone who has had to peruse this website. It's not for entertainment value. If you are here reading this, you need to be here, and I am so sorry for that. Good luck to everyone, including me and I wish us all a long healthy future.