Hello everybody, My name is Gary I am 53, about 2 months ago my ex-wife who's 48 was diagnosed with bile duct cancer, first let me explain, all though Donna and I are not married we are still very close and have been together for 25 years, talk daily and see each other several times a week, we split about 10 years ago, but were fortunate to stay friends, we also have 2 children together. a daughter age 20 and a son age 18 (who lives with me). Three years ago I married a lady that I had been with for 4 years, and yes they get along great, even going shopping together, I feel a very lucky man to know two such great people.
The reason I mention this is because I have become what I have found to be called "caregiver" to my ex. This has strained relationships with my wife, but we have talked and she is very supportive now of my efforts to help Donna. OK I know TMI !
About June 1st Donna had been feeling ill for a couple of weeks and came down with jaundice, our daughter rushed her over to the ER where they did some tests and thought it might be Gall Stones, she was sent home and a few days later met with a GI who had her undergo more tests, CT, MRI and bloodwork. By now mid June there was a strong suspicion of cancer on her imaging results. On June 22 she underwent an Endoscopy/ultrasound where they placed in a stent and took a biopsy, the surgeon gave us the bad news, there's no cure but he told us she was lucky as she was in the 5% of patients who were good candidates for resection surgery. He would refer her to the surgeon at UCI. He called and ten days later she met with him, and he scheduled her surgery for July 21st, Seemed a long time to wait to me when the typical prognosis may be a matter of months ?
By this time I knew all about the disease and the poor prognosis, she didn't want to know to much about the details so left it to me, I think I logged over 100 hours online in those 2 weeks. I didn't like what I saw , but I saw some hope thru surgery and chemo and radiation.
About a week before surgery the surgeons office called and canceled her surgery as her insurance wouldn't cover it ? WHAT ? Turns out that her insurance provided by her employer had a $5,000 cap !!!!!!!!
They referred us to Medi-Cal, Denied, Then MSI (local county indigent insurance) who politely scheduled an appointment for August 2nd to apply, all though the wait time for approval or denial was about 8-12 weeks! Things were getting desperate, I looked at all the options, take her to County Hospital,(none in our County!) I spent up to 12-18 hours a day online and decided that going to India might be our only resort, $7-$10k for the surgery versus $150k here.
I sold my motorcycles and got together all the cash I could, barely enough. This was now our plan "B". Some good people rallied and made noise....The director of MSI called one night and said don't worry were going to push it thru. A week later she got the call and approval, but when she returned to UCI they told her that MSI wasn't good enough and she needed to get on Medi-Cal ?????? we contacted MSI who referred her to another Doctor/hospital group...she didn't like the new guy but was desperate at this point. They did the surgery on August 5th. I wasn't allowed to meet or question the surgeon prior to surgery, which I was not happy about as by this time I knew too much and wanted too know a few things like was he going to be surgicaly aggressive or just look around and sew her up if was a tough one? There had been no more tests or scans of any kind since prior to mid June, almost 2 months ago. I had know idea of staging or type of tumor, I got very good at reading all of her medical records and determined that she had extrahepatic bile duct or klatkins tumor with possible portal vein and 1 possible lymph node ,the tumor was 2.3cm. I needed more answers, but she was in surgery and now she had a chance. Five hours later the surgeon came out and said sorry couldn't remove anything as it had spread beyond the bile duct wall. He was able to do a Roux en y and advised finding a good Oncologist........
The incision was massive 18" across her belly and a vertical 8" incision up to her ribcage. NO Laproscopy here, as this hospital doesn't have those facilities! She is now home recovering, and we have an appointment on Wednsday with an Oncologist who has seen a "few" patients of this type. I haven't yet found another one locally who accept MSI. I have talked to some good people at the Mayo and down at Moore Cancer center at UCSD. I am going to try and get her a GOOD second opinion and see if we can get her into a clinical trial with hopes of a future surgery. She is tough and wants too fight, she was doing well the last week recovering from the surgery but in the last couple of days she seems "more ill" and I'm not sure if that's the cancer or just overdoing it from the surgery. So that is our story up to now, if any one knows a good Oncologist in Orange County California , I would be very grateful. Also I just want to say thank you for this website and too the people who post here, all though I came across this site early on I never realized that there was a forum like this. Now I will be researching it in all my free? time.
I hope that she still has some time I guess I'll know more when we meet her Oncologist as I still don't know what her stage is, I'm guessing IIIb or IV...based on what I think I know. I have never cried so much In my entire life I can't imagine my kids growing up without her she is the rock of the family and I am so spent, but still determined and not giving up. Thank you for reading this, Gary