My Mom’s Battle with Pancreatic Cancer.

I want to thank everyone around me on twitter and Facebook for support and help during this difficult time. I see now how truly powerful social networks can be in times of need. I am sharing this story in hopes of getting insight from others who have been through this before.

The Background

4 weeks ago my beautiful Mom was diagnosed with pancreatic cancer. She is 57 years old, much younger than most with this type of cancer. She is the most amazing woman I know. She has been through so much and sacrificed a ton for me and my brother. She was born and raised in Germany with 4 other siblings in a tiny 2 bedroom apartment. Her parents only had one leg each due to World War II.

She slept on the couch with her sister and did not even have her own bedroom. Despite all of that, she is the strongest woman I know. She met my dad while he was in the U.S. army stationed in Germany. She emits joy, laughter and calls things as they are. She is stubborn, a neat freak, smart, funny, sweet and creative.

About 6 weeks ago she was hospitalized for jaundice and that’s when some further investigation revealed a mass in her pancreas. The good news is it has not spread but the bad news is that it’s a very complicated cancer.

Her bile duct collapsed as a result of the tumor pressing on it. So they had to put a stint in her bile duct to keep it open. The tumor is also entangled among her veins that supply blood to some of her her major organs.

Our Healthcare System

We have been waiting for 6 weeks for treatments to start and it’s been a whirl wind of emotion and confusion.

The doctors wanted her to be in a study that would shoot radiation directly in the mass but we were just told by the doctors that they “forgot” to get clearance for all these tests from the insurance company.

Thus, my parents may be facing tens of thousands of dollars in charges that they assumed were cleared by the insurance company and to be covered. At the fault of the doctors and hospital – we just found out they did not get clearance for all of these tests.

In the mean time, she’s been in constant pain and sickness – already loosing weight because she can’t eat.

Today, we just found out that the insurance company said they would not pay for any of the normal treatments if she decided to do the study because they considered it “experimental”. I can’t fathom how they could do such a thing and say no to a treatment that could possibly save her life and others – even though the trial is paid for. They said they would not pay for her chemo if she chose to be in the trial. Thus, she won’t be in the trial.

Her doctor said it may take months to fight the insurance companies to get approval for the clinical trial. Unfortunately, time is not on our side.

She has not had any treatments for 6 weeks because of the confusion. She is supposed to finally start Chemo on this coming Monday.

I have so much anger towards our health care system and its stupid bureaucracy. How is it an inmate will get better health care than my Mom who has worked hard her whole life?

Sorry for venting… but it just doesn’t seem fair.

Does anyone have any suggestions on how to deal with insurance companies and clinical trials?