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Pancreas Cancer Web
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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