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REGINA Chicago


My journey started in June 07, I was experiencing pain in the right side and thought it was my gall bladder. After seeing my GP he suggested I go see a gastro doctor. I made an appointment and he suggested I get a ct scan. The scan showed a small mass on the pancreas. We then scheduled an ERCP at Rush hospital. The test confirmed I had a mass on the pancreas about 2cm, but because of where it was they were unable to biopsy it. The gastro doc referred me to Dr. John Butsch a surgeon at Rush. I met with doctor Butsch and he said I needed surgery to look at the mass and that I would possibly need whipple surgery. All this time I never put mass and tumor together, I don't know why but I never heard anyone say CANCER. I just didn't comprehend the severity of my situation. I discussed it with my husband and due to a very important wedding in the family I scheduled the surgery for Oct 4, 2007. I really was not sick or in any terrible pain before the surgery and thought I would have the mass taken out and after a few weeks go back to work. During the time before the surgery I cleaned my house really well figuring I would be down for a few weeks. I really was not prepared for what was about to happen. I was an office manager for a truck dealership for 7 years and I made step-by-step instructions what I did everyday, this ended up being about 20 pages. I loved my job and thought I would be able to continue working after the surgery. When the day came for surgery my husband, sons, mother-in-law, sister and brother-in-law all came. I got changed and sat with them till they called me. On my way I told my son Dominic how much I loved him and how proud I was of him. I don't know what prompted me to do this but I am glad I did. The post op room was full of patients on gurnees and it was cold in there. I was put on a gurnee with a heated blanket. A resident came over and asked me some questions and sort of explained the surgery. After that I don't remember anything until waking up in ICU 4 days later. During the surgery the mass was found to be adenocarcinoma of the pancreas. The tumor was 1mm away from the sma and the doctor had to scrape it away. No lymph nodes were involved but there was some nerve involvement. The tumor was 2.5cm at the ucinate process. I had a pylorus preserving whipple, which means they took the gall bladder, duodeum, head of pancreas, some intestine, but no stomach. The surgery took about 6 hours. I developed pneumonia and was in ICU for 5 days post op. On day 6 I was moved to regular room. I was under alot of sedation and don't remember alot. On day 10 I was sent home with feeding tubes and home health care. I was happy to be home, I sat in the recliner alot and cried alot. My husband took over completely, he is superman. Everything I needed he tended to. Pat and one of the guys from work came to visit and couldn't believe I was home so fast. One day later I noticed some leakage from the incision, then it got so bad I was using paper towels to soak up everything that was coming out. Don called the doctor and he said to come right in. At the office he looked and said I had a fistula and the leak was probably from one of the connections. He started to take a few of the staples out right in the office and it was like the dam broke. I was admitted right away. They tried to control the leak with just sopping it up with gauze but that was useless, so they took more staples out and connected me to a wound vac. This was a mesh that was like ac filter and they packed it into the incision and covered it with a sealed bandage then the vac was attached, it would suck all the air out and then the bile was vacuumed out into a bottle. This was extremely painful and I really wanted to die everytime they had to change the filter and mess with the incision. They were giving me morphine for pain and realized that my body doesn't like morphine and it didnt work so they changed me to dilaudid, that worked. I was in hospital from Oct 16th until Nov 20th. I got to come home 3 days before Thanksgiving. I was so happy to be home. We went to my SIL house for the holiday even though I couldn't really eat. Nothing I ate had any taste. I eventually started to eat more and I drank alot of apple juice because it was the only liquid I could tolerate. My pain was tolerable and eventually I was not taking anything. December was a great month for me. I was getting stronger and I was able to go out once and get all of my Christmas shopping done in one day. We had christmas at my sons house and I was so grateful to be alive. I was scheduled to start radiation in January. On New years eve I ended up in the ER with a kidney stone. I never realized how painful those things are. I only spent the night in the ER and went home with a screen to urinate through to check for passage of stone. The pain was not so bad so I figured I had passed the stone and didn't notice it. I had to have a port put in to receive my chemo and that was not bad at all, just scarry. I started 5fu and radiation for 28 days. About 1 week into radiation my neck started to hurt really bad, they checked me out and found I had a blood clot from the port. They started me on Lovenox shots in the stomach and put in a new port. I hated those shots, they hurt sooooo bad. Radiation was not bad at all, I only got really tired at the end of treatment. I had the month of March off and was going to start Gemcitabine chemo March 31st. I started chemo and it was not bad at all. I didn't get sick but then I started having pain in my stomach and they switched me back to 5fu pump. I wore the pump home and it was much easier than sitting at hospital all the time. I did have to go to oncology dept for infusions once a week They did try me on Oxcilliplatin but it gave me terrible neuropathy to the point I was losing use of my right leg, so they stopped that drug. I was also on xeloda. I still had on and off issues with stomach pain. In July my Ca 19 rose to 252 and scared us. But it turned out to be pancreatitis and the numbers went down eventually. I finished chemo in Sept and was doing well. I did start having alot of pain in the upper right side of my stomach so Dr Butsch decided to do surgery again. He found alot of scarring and adhesions and took 1/3 of my stomach out. The pain seemed to get better after that. In December I had terrible pain again, and they found a pocket of bile in the afferent loop of bowel, they put in a drain and the pain got better. They still don't know why this happened. I have had so many ct scans, endoscopies, upper GI, lower GI, colonoscopy, etc and they can't find the reason for my pain that is now in my left side, right below the rib cage. I am on dilaudid 8mgs every 4 hours, fentanyl suckers for breakthru pain, and fentany 25mgs patch. Even with this when I have a bowel movement the pain is so bad I want to die. None of the doctors can explain my pain and the next step is surgery again to see if it is adhesions. I am 20 months post whipple and it has been a loooong journey. I fight everyday to conquer my pain but I am starting to get discouraged. I am on TPN at home now due to not eating, and I still have bile drain. They still don't know why I am not draining normally or why I have such a large output of bile. Maybe this is the start of the end for me but I am unwilling to quit fighting. This disease is overwhelming and soo many of my friends here have passed. I pray for a cure or at least a way to keep us alive a little longer. I thank God for my husband who has taken care of me like an angel from God.


Posted 07/10/2009 09:23 am by Regina Dames
E-mail Address: regidames@aol.com

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