Desperately seeking support

Hello everyone my name is Michelle and my mom begun this dreadful journey in January 2013 when she was admitted to the hospital via the ER for jaundice . After biopsy’s ,MRIs, CT Scans, and blood work she was diagnosed with Cholangiocarcinoma on October 18. I believe the doctor said it was Hilar Cholangiocarcinoma. They also stated that due to the tumor being centrally located it was unresectable. My mother resides in my hometown of Chicago while I’m currently living in TN an hour outside Nashville. However, I have been in Chicago on FMLA after her last stay in the hospital due to a failed stent. She was scheduled to start radioembolization but that was delayed when the stent failed. This was her 3rd stent placement which consisted of 2 plastic stents. When she was admitted her on Nov 17 her bili was 18 . Nov 27 she was released and her bilirubin dropped to 9 . Apparently the stents are working because she has been doing extremely well for the last few weeks. The IR that we are seeing stated her bili need to be at least 1 before she can began ant treatment. December 18th labs showed bili at 2.7 and we will do a repeat on January 9 per the Dr. request. So, we both decided that since treatment probably want start until well after the first week of January we would travel to TN to spend time with family for the holidays. The one thing my mom has always wanted to experience was New Year Eve in Vegas, therefore, she, her sister, and brother law flew out to Vegas on Dec 28 and will return on
Jan 2 (smiling )
I thought she should do whatever brings her joy while she is feeling at her best.
So, that sort of bring me to the reason I decided to chime in tonight. I have been following this board since October when I was scouring for as much info about this disease as possible. I would check in almost every night reading random discussions or following some who pulled my heart string. I have notebook after notebook with notes about whatever I thought may or may not been important. Since, I have been caring for my mom nonstop for the last few months and this short break was much needed as I must now prepare for the long haul.. However I’m constantly feeling inclined to search for something everyday most time I don’t even know what I’m looking for. It scares me that she is feeling so well. I feel like it’s the calm before the storm. I know I have been obsessed with finding ways to either save or prolong my mother’s life. I am a 46 year old mother of 2 beautiful children, who are both in college. But, my mom is my everything. I was really looking forward to her and I traveling and growing old together. So, it has been so sickening to think tat she may not be with for much longer.
I would guess one of the most difficult things that any of us has to deal with is finding a good support system without feeling like you are burdensome. Unfortunately, most of my family members are either in pure denial or just not available. So, I decided it was time to look for some nontraditional support( smile).
I apologize for the lengthiness of my post, but I tried to provide as much info as possible. Please feel free to weigh in and share your opinions, it will be greatly appreciated.
The doctors that is caring for my mom has made me very nervous. After asking each doctor not one have given me a detailed diagnosis, how many tumors, prognosis. Maybe I’m missing something but everything seem so vague and confusing. If those with experience eyes can determine from the info I’ve given, which I know is not much; Has her lymph node been effected and if so what does that mean. I’m open to whatever info you can provide, even if its not the greatest news. I just need an idea of what direction this is going.
First of all , she is being treated in Chicago through Advocate Medical Group.
Primary: Dr.Azra Omerovic
GI- Dr. Hareth Raddawi
Radiology Oncologist – Dr.Jason Hyuk Kang
Interventionist Radiologist- Dr.Matthew Howenstein
Medical Oncologist- In the process of researching for one. Mother refuse to do any chemo unless it is ABSOLUTELY necessary.
I don’t know how successful it will be because he is not in her network, but I’ve requested a pre auth for 2nd opinion with Daniel Catenacci at University of Chicago. It’s a long shot but we will see.
Side Note: Her left kidney is under developed and situated on right side. The only other health issue is hypertension and She is prescribed 20mg lisinopril. Otherwise my mother was in very good health. She has always been very health conscious. She was not a very active person but her diet was strictly organic and vitamins. She was a smoker and light drinker before getting sick, since then she as quit drinking and smoking.

She is eligible for the Medicare due to a voice disability she suffered in 1998.
Her insurance is Humana Gold Plus(HMO)
She is self employed C.P.A and own and operates a Tax and Accounting business in Chicago
Marital Status: Single
Health Risk: Previous smoker and social drinker, hypertension.
Side Note: Her left kidney is under developed and situated on right side. The only other health issue is hypertension and She is prescribed 20mg lisinopril. Otherwise my mother was in very good health. She has always been very health conscious. She was not a very active person but her diet was strictly organic and vitamins. She was a smoker and light drinker before getting sick, since then she as quit drinking and smoking.

This is what I know from what I’ve read:
• Central intrahepatic billary dilation
• Local multifocal involvement
• Lymph Nodes- yes
• Numerous nonenhancing cystic lesions within the liver
• Redemostration of abnormal enhancements at the porta hepatis measuring 4×2.8cm
• Surrounding altered perfusion of the liver on the arterial phase
• Mass effect on adjacent vasculature
• Central enancing mass at the (port hepatis)measuring 4×2.8cm
• Pancreatico billary positive
• Central tumor ( Right and Left lobe) infiltrated large portions of vessels