My name is Barbara, and I had a Whipple surgery Sept. of 2005. I had spent the summer of 2005 not feeling well.
I was tired all the time and my appetite was very poor. Eventually, I was unable to eat anything without terrible indigestion. Due to the fact I was 30 lbs+ over weight, 62 years old, I thought that it was not such a bad thing not to be able to tolerate most foods. My husband hounded me to go to the Dr. to find out what the problem could be.
I figured it was my gall bladder. I finally went the Friday before Labor Day. I walked into my Primary Care Dr., and she said the following thing, 'You are yellow'. Did I not notice? I had a 'stat' bilirubin test and it was off the chart. The Dr. immediately sent me to the hospital that afternoon.
I protested that it was a holiday weekend, and I had a ton of company coming. She said let them barbaque their own food. I needed to find out what was going on in my body. The Dr. thought it might be a gall stone stuck in the bile duct. I went to the hospital, had an ultra sound, it showed nothing.
Then the battery of tests started. At the end of 5 days and many tests later, it was discovered that I had a tumor either in the main bile duct or the head of the pancreas. I was told how lucky I was that I was a candidate for the Whipple surgery. The surgery was scheduled for 3 weeks later. I then proceeded to have 2 more opinions at very prestiges medical facilities. They all had the same conclusion. Tumor and 95% that it was cancer.
The surgery was performed Sept. 26, 2005. I tolerated the procedure very well. It was in the head of the pancreas. The one complication was the tumor had grown onto the portal vein. A vascular surgeon came in at that point and resected my portal vein. Now I had what is called 'positive margins'. I spent 9 days in the hospital.
I went home with a feeding tube and various drains. I had raging diarrhea. The drains eventually came out, and the feeding tube was dicontinued after 2 weeks. The diarrhea still persisted. I started chemo in Nov. of 2005. It was Gemszar. I had 2 rounds. In Jan. of 2006, I started IMRT radiation therepy in conjunction with 5FU chemo. This lasted until March 2 of 2006.
Since that time all my CT scans have come back 'clean'. I have my diarrhea under control. I am taking pancreatic enzymes. My level of energy is not what it use to be, but I am getting use to the 'new' normal. The main 'leftover' is fatigue. I am told that is caused from the chemo and radiation, plus having such a major sugery.
I recommend that anyone who has any kind of cancer seek out other people experiencing the same thing. It helps emotionally. It is a relief to know that you are not alone in your struggle.
My main caregiver was my husband who was the best ever. I could not have had a better caregiver. He has done everything. My family and friends supported us in every way possible. You can not manage this disease alone.
UPDATE: Tuesday, February 5, 2008 11:22 p.m. Barbara Brandman Alexander who was a young 64 years of age passed away peacefully surrounded by her family on February 5, 2008 in California.
She was full of wisdom, smiles and compassion for those around her. She was a teacher, mother, wife, daughter, sister, aunt, cousin, grandmother and good friend.
One of her sayings was, 'what will be, will be but I will be informed.'
Barb was the pilot of her life and we surrounded her with whatever she needed. It was an honor to help care for her. She did not want anyone to grieve for her after she passed. She wanted everyone to continue to live their lives to the fullest each day.
Barbara's caregiver was her husband 24/7 for 2 and 1/2 years. We are very proud of him.
Barbara comes from a family that had to fight each day to survive. Her family fled Russia long, long ago and lived through horrible unspeakable ordeals. Barbara's uncle also died of pancreatic cancer.
The family is very, very grateful for all those on this Johns Hopkins Chat Board, for doctors accross the USA who helped with sorting out information when needed for this stranger in need named Barbara and for those continuing to research everyday for a cure for pancreatic cancer.
Our family knows what all pancreatic cancer patients go through and also the the caregivers and you are in our thoughts daily. Thank you for getting up each day and making a difference.