Susan’s Story 02/14/71 – 01/20/08

    After being diagnosed with IBS many years ago abdominal pain was a regular occurrence for Sue. Until July 07 and August 07 her pain became sometimes unbearable to tolerate. After being seen by Dr. Herlihy M.D. on September 04, 2007, he scheduled Sue for a DISDA scan and CT scan of her abdomen to further evaluate this abdominal pain. The CT scan was on 09/18/07. The DISDA scan was on 09/20/07. After 09/20/07 scan Sue was scheduled for an ERCP on 09/24/07. The surgery was performed by Dr. Vallone D.O. several attempts to put in stent in common bile duct Dr. Vallone had to abort the procedure due to the prolong procedure time and large doses of sedatives. Then Sue was scheduled surgery on 09/26/07 at Beth Israel Deaconess Hospital (Boston) for another ERCP to be performed by Dr. Chunttani. He successfully inserted a plastic stent. Dr. Chunttani didn’t like what he saw. So he scheduled an MRI for Sue on 09/27/07 to see what was blocking the common bile duct. That night Sue, Jeff (Sue’s husband) and Jerry (Sue’s dad) sat down with Dr. Chunttani and Dr. Kamdar. What they were about to tell them would change their lives forever. Dr. Chunttani informed them that Sue had a tumor a little bigger than a golf ball in the common bile duct region. Sue was then sent for biopsy.

    On October 16, 2007, Sue and Jeff met with Dr. Sanjay Jain M.D., and his assistants Dr. David Portnoy M.D., and Megan Healy R.N. at BIDMC. At that time Dr. Jain informed Sue and Jeff of the biopsy results, which that the tumor was cancerous and the cancer was Cholangiocarcinoma or otherwise called common bile duct cancer. Dr. Jain contacted a top liver surgeon in the area on a conference call. The surgeon said that it was inoperable at this time, but would revisit the issue after chemotherapy. Sue and Jeff were devastated about the results. Both Sue and Jeff tried to stay positive thinking that Sue was only 36, healthy, and had two beautiful children, Zachary (3) and Sofia (1). Sue had it in her mind that she was going to beat this cancer.

    On October 24, 2007, Jeff had to rush Sue to BIDMC with a 104.5 fever, she was admitted with cholecystitis. This was an infected gallbladder. On 10/25/07, Sue had her gallbladder removed by Dr. Vollmer and was discharged on 10/26/07. Sue had restrictions such not to lift anything over 25 lbs., no house work, and no heavy exercise. She couldn’t even pick up her children.

    On November 08, 2007 Sue had an appointment at BIDMC for a CT scan and to sign paper work to do a trial study of a new type of chemo. Coming home from Boston Sue began to become ill and started vomiting up blood. Jeff then rushed Sue to St. Luke’s Hospital (New Bedford), where she had to have emergency surgery on her esophagus due to excessive bleeding. Sue was discharged on 11/12/07.

    On November 14, 2007 Jeff rushed Sue back to St. Luke’s Hospital (N.B.) with a 102.7 fever. Sue was transported to BIDMC by ambulance. Sue had to have the plastic stent removed and metal stent was installed due to bile duct blockage. Sue also had a blood, liver, and bacterial infection. Dr. Love from Infectious Disease visits to inform Sue and Jeff of her infection. At this time Sue was losing weight but her abdomen area was enlarged due to infections, after several attempts to drain her abdomen. It only worked for a short period of time. The fluid just kept coming back. Sue spent Thanksgiving in the hospital. Jeff brought her some Thanksgiving dinner but she only ate some turkey and apple pie. Sue was discharged on 11/27/07, with a PICC line installed so she can give herself the antibiotic (Ertapenem) with the assistance of a Critical Care Nurse. Sue had to give herself the antibiotic every day. The Critical Care Nurse came every Wednesday to see if Sue was doing o.k. with the antibiotics.

    On December 14, 2007, Sue had her 1st round of chemotherapy everything went o.k. On 12/19/07 the PICC line was removed by the Critical Care Nurse. Sue was supposed to have her second round of chemo on 12/21/07, but couldn’t due to a 101.5 fever. The fever came down and Sue was sent home. Jeff had to bring Sue back to BIDMC the next day because Sue had yet another blood infection. Sue had to spend Christmas in the hospital. Jeff taped Christmas morning with the kids for Sue, but it wasn’t the same for her. On 12/27/07, Sue had another PICC line put in and was discharged on 12/28/07. Sue was complaining of leg pain at this time. On 12/29/07, Jeff had another Christmas morning for Sue and the children. It cheered Sue up a lot. On 12/31/07, Jeff rushed Sue back to BIDMC with leg pain that was so unbearable that Jeff practically had to carry her to the car. She had to lie down all the way to the hospital. Sue had massive blood clots in both legs and small blood clots in her lungs. She had to have emergency surgery to install a filter to prevent the blood clots from traveling to her lungs or heart. From 01/01/08 – 01/19/08, Sue had her abdomen area drained almost every day with little relief for her. On 01/08/08, infectious Disease informed Sue and Jeff that they found a virus in the fluid that was drained.

    On January 10, 2008, Terry Francona (manager Boston Red Sox) visited Sue at the hospital. It put the biggest smile on Sue’s face in about three months. Sue was a big Red Sox fan.

    On January 18, 2008, Jeff brought up Zach and Sofia to see Sue. They are accompanied by family and friends. A priest from BIDMC visits and says a few prayers and blesses Sue.

    On January 19, 2008, Jeff, Gail (his mom), Sharon (Sue’s sister), and Michelle (Sharon’s friend) were at Sue’s bedside. Around 10 p.m. a priest from BIDMC visits and gives Sue her last rights. She was pronounced at 12:10 a.m. on 01/20/08.

    Shortly after Sue’s passing Jeff found a journal that Sue started but never finished. This is what she wrote:

“At this very moment 12/08/07 7:39 p.m. I still haven’t started chemo yet. There have been so many setbacks. I keep saying I’m going to start this journal, but honestly I’m very scared. I don’t want to leave my husband or family. I need them and they need me. I’m 36 going on 37 in two months. I’m supposed to be starting chemo on Friday 12/14/07. My chance is to shrink the cancer with chemotherapy and then surgery to remove the rest. Were trying to keep things as normal as possible for the kids, but I can’t pick them up and I know they can sense this. My babies and my husband are my life. They are the best thing that has ever happened to me.”