Dear Franchamp:
I totally feel your pain. At 10:10 this morning it will be exactly one week since my cherished mother passed away from this horrible illness. Our family has been on a 5 month roller coaster. When she drew her last breath my father said "it's finally over", meaning her suffering. But I told him I thought it was just beginning (our suffering). We were fortunate enough to have a doctor who ALWAYS returned our calls. I'm so sorry that you are not getting what you need from her doctors. Rattle cages - do whatever you need to do. We eventually reached out to the local hospice program, which helped us alot. Mom hated it. "I know what hospice means", I remember her saying, and crying. Yes, we all know what hospice means but when the care at home does not meet the needs of the patient I'm not sure you have any other choice. I'll give you a break down of how it happened for us because you are right - it does not seem to be the same for everyone. As of New Year's Eve Mom was still feeling well enough to have a small gathering at her house. She had a CT scan on 01/05 and was told on 01/09 that the disease has progressed considerably and her doctor said no more treatments. By the middle of the month she became very jaundiced and weak. January 25th they placed a stent in her liver to correct a plugged bile duct. Doctor said, "take her home and make her comfortable." I was livid. I just could not accept that there was nothing that could be done. I felt like they were giving up on her, and she did, too. But we were on a slippery slope and picking up speed fast. She stayed in the hospital for one week and within just a few days of being home we were forced to call hospice to help with her comfort. Second hardest decision I ever made in my life. The first being having to remove her from the home she so loved just days before her death b/c she became unable to swallow and we needed to get her pain meds into her thru intravenous. At the hospital it did become easier in that we knew she was comfortable, but she did not communicate beyond that point and died five days later. I think once she was put in the hospice unit of the hospital she made a decision to "pull away" and prepare for death. This disease sucks, there's just no other way to put it. And there is not NEARLY enough research being done on pancreatic cancer. I believe that is b/c there only around 30,000 new cases diagnosed each year - which is very small in comparison to, say, breast cancer. Therefore, the drug companies don't see the big "payoff" that would come with developing a drug to fight pancreatic cancer. I'm only aware of one ongoing research program in the entire country devoted to this disease and that is at Johns Hopkins in Baltimore, MD. And they rely on organ donation from the families of loved ones who have not survived to make a donation of the diseased organs. We tried to donate my mother's pancreas and liver but, unfortunately, they were currently undergoing their annual review process and would not have been able to accept new donors for about one month. That did not fit our time frame and we were very disappointed. For anyone else out there who feels my frustration please, PLEASE consider making a donation to this resarch program when your loved ones pass. It is called the "Rapid Organ Donation Program" and more information can be found on the Johns Hopkins Medical Institute web site. I apologize for making this a crusade, but something has got to change with the way pancreatic cancer is being treated. This has all been very, very difficult...