THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Pancreas Cancer Web
I live in Tacoma Washington, am 52 y/o female and was diagnosed on Jan 18,
2007. I became ill in Dec 2006, just three months after moving to Chicago
with the love of my life, Dave.
I have always been the 'strong' one, the 'take charge', be in control member
of my family. I have always been independent, don't ask for help, dammit, I
don't need anyones help. Not to be ugly, that's just the way I was. I'd been
married to a functioning alcoholic for 20 years and it was a hard habit to
change. Asking for help wasn't just hard, it was horrible for me. So keeping
my illness from my family was necessary for me. Find out whats wrong, get it
fixed, and not worry anyone. My family was in Washington and North Carolina,
hiding was easy.
My symptoms were classic: full-feeling, fatigue, jaundice, vomiting,
funny-looking stools, brown urine, itching. But I had given up my insurance
when I moved and hadn't been at my new job long enough for insurance. First
time in my life I am uninsured and I get sick! I went to a county hospital
where the admitting er doc treated me like crap. I was so weak I couln't
stand up. They ran my billirubin and admitted me. He accused me of being an
alcoholic, an iv drug abuser, and told me i was a diabetic and needed to lose
20 pounds, none of which was true, except the 20 pounds part.I had a liver
biopsy. The most single painful thing ever done to me.
They gave me a 'liver specialist', Dr. Smith, who blamed all my problems on a
side effect of macrobid, an antibiotic that I had taken for a uti a month
before. I saw him in his office two weeks later, yellower and itching like
mad, and he said maybe it was the lasinopril I take for mild hypertension.
Told me to stop taking anything. Throw out all vitamins, asprin, anything I
had been taking.
The sunday after Christmas I woke in the night with a massive headache that
made me cry, it was so bad. I never get headaches. I must have passed out
because I woke later and couldn't see. It was weird, all i could see was
grey, light and dark.Dave helped me dress, get down to the garage, kept my
hair out of my vomit while trying to drive.
Another trip to the same er. They run tests, including a spinal tap, yuck!,
mri, ect.Quick trip by ambulance to Rush hospital in the city. It took three
days for my eyesight to come back, but in the mean time I met great doctors,
who didn't think i was a terrible person. They thought I'd had a stroke, but
called it a 'protein bleed'. Did an ultrasound of my abdomin, said my bile
ducts were fine. Went home, and a few days later I couldn't get out of bed.
literally, could not get out of bed. Luckily my cell phone was on the nite
stand. Again Dave takes me to the er. The nurse sees me coming, recognizes
me, pulls me right into a room. She said she didn't want the people in the
waiting room staring at me. I was orange, even my eyes.
They call in Dr. Smith who does an ERCP on me. When I wake up later they have
me all ready for a ride.
Again a quick trip by ambulance to Rush.
I finally have to tell my family I was sick. My two sisters knew something
was wrong, but how do you tell people you are sick when you don't know what
I find out a few days later that my 'specialist' saw a mass on my panc while
trying to place a stent in my bile duct. He stopped and made the decision to
send me to Rush.
Dave convinces me to call my family, they needed to know how sick I was. My
bili was 31, I itched so bad I scratched myself raw and they put me on iv
morphine. A few days later my sister is flown to Chicago and checks into a
motel next to the hospital. She is like a bull dog on drugs: she won't let
anything go. I'm on morphine and sleep all the time. I'd lost 30 pounds in
I couldn't eat, I felt so full all the time. They kept me hydrated and
drugged, and on Jan 17 did another ercp to place a plastic stent.
The next day they tell me what I have. A 2 cm tumor on the head of my panc,
with partial involvment of the portal vein. No sign of mets! I get to meet
Dr. Millikan, my dream surgeon for a whipple. My onc is a dream: I am so
concerned about the medical bills. He askes me if I've seen any cancer
patients dieing in the streets.
When I told Dave I had cancer he said 'But you're my best friend!'.
The hardest decision was to leave my Dave. I cried because I have cancer but
my heart broke and i sobbed like a baby leaving him. It makes me tear up just
remembering the night at the airport, saying good bye to him. I told my
sister that my heart was breaking, I could feel it, we would never be the
Why did I leave? Dave and I were basically alone. He worked, had a house
payment. I had no money, no job, and was in store for some serious problems.
I would need a ride to treatments. I would need a lot of help. In Tacoma I
had a huge family-friend circle to help me. I had no choice. So I moved back
into my old bedroom, with my parents.
Two weeks later I was at the Seattle Cancer Care Alliance where Dr. Lin was
given to me. He took one look and said 'You are sick! You were supposed to be
better!' My stent had failed, my bili was back up in the 30's. Another ERCP,
this time at the university of Washington. They were fabulous! This time a
metal stent. Whew! No more itching!
Met Dr. Patel, my radiologist. Got fitted in a mold for radiation. Got a port
placed. My tumor marker was 9850. Some numbers you never forget.
The plan was to radiate the tumor, give me chemo and get the tumor off the
vein so I could have a Whipple. I then recieved 25 sessions of radiation at
the UW, and every thursday went to the SCCA for Gemzar. I got a total of 15
iv treatments. Tried sisplatin once and stayed in bed for two weeks. Yuck.
I found out that my dad's dad died of stomach cancer, but that was in 1964
rural pennsylvania. There is a genetic link. My dad was just diagnosed with
prostate cancer that has met. to his bones. He is 85.
I started the process of State medical aid and they hooked me up with Social
Security. I should have started it earlier. I had to wait five months, but in
July I started recieving total disability. Plus medicaid. Having a terminal
disease makes it a lot easier to get help. And I thank God my parents could
The spring went by fast. I had the use of my dad's new toyota avalon, and mom
n dad gave me an allowance every week. Just like old times. My niece was my
chemo buddy. Five weeks of driving to Seattle every day.I had no side effects
from the radiation. The gemzar made me sleep for a day. I looked great.
Gained back 16 pounds. Started walking, got up to four miles a day by
Being humble was hard, asking for help was hard, telling people I couldn't go
to partys because I was sick was hard. Not going to salad bars was hard.
Staying away from children was hard. Being weak and tired was hard. But it
was okay! I didn't burst into flames or die of shame because I couldn't walk
at the mall! They understood when I had to take a rain check. They held my
hand when I got bad news, and helped me celebrate good news!
I had a PET scan and came out cancer free, as far as they could tell. The
tumor was not only off the vein, but completely gone! Yay Dr. Patel!
Sept i flew back to Chicago to see Dr. Millakan. He had done near 200
whipples and I had done enough research on the net to know my life depended
on my suregeon. He did my Whipple on Sept 28, 2007. It was the most difficult
thing I have ever lived through. I was in great physical shape, (if I did it
again I would work on my upper body more), the surgery went perfect to the T.
Did not need a new vein. I felt like an octopus after surgery! Tubes hanging
out every where! I drained perfectly, had bowel movements, my doc's loved me!
I did get fond of that morphine pump, though!
The tube in the nose was a B
@#$%! When they took it out the nurse said 'I've
never seen anything like that and don't ever want to see it agin! It looked
like he was starting a lawn mower!'
In the hospital 12 days. Definitly needed the compreshion garment! (Found out
later that the piece of elastic with velcro that held my guts in cost 560$!
Should have kept it and sold it on E Bay!)
I now tell people I have two butt cracks! A little one in the back and a big
one in the front! It is a very ugly scar, a plastic surgeon he was not. But
that is the least of my problems.
At first I could only eat very small portions. One regular mc' d's
cheeseburger was almost too much. Lots of pooping. Hurt when I coughed,
sneezed, yawned! Food did'nt want to leave, would burp it up all day.
I had my 30 day check up and the Doc was happy. My reports came back clean:
clean margins, no mets in any tissue, but my nodes had been killed by the
radiation so they couldn't tell if they had been involved.
I went three months with no chemo. By the time I got back to see Dr. Linn and
have a ct scan, my tumor marker had gone from 20, pre-surgery, to 107. Bad.
Very bad. I cried all the way home.
Mets to the lungs, 4 at 4mm. Very small, but there. A suspicious something on
my liver, might be scar tissue from the liver biopsy. Gemzar is not working
so on to Xeloda, 7 pills a day and celebrex, 200 mgs, which medicaid won't
pay for and I have to order from Canadadrugs.com, for half the price of it
here. Dr.Linn says there is thinking that the celebrex keeps tumors from
I've been on this for three, two weeks on/ one week off courses. My hands are
peeling and I'm always tired. I get nauseated after eating. I had a CT last
week and tomorrow go for the results.
My case is similar and different at the same time. We are all different. Most
have pain, I've never had 'cancer' pain. Most throw up alot. Not once since
treatment started. Post whipple I can eat and drink anything! I love mexican
food, especially Midori margarittas! I did go through a stage where I would
have heartburn and took prilosec, but it onlt lasted a few weeks.
I have left out the most important medicine I have had: my Dave. I looked to
him for strength. My goal was to get healthy so I could go back to living my
life with him. He was my rock, I don't know how I could have gone through all
this without him. I've never met a man who so 'completes' me.(Sappy but true)
I love who I am because of him.
I live in 2 places: Tacoma and Chicago. This past February Dave and I flew
to Ft. Meyer's florida for 5 days. I was healthy, tho weak, and we had a
fabulous time. We made the most wonderful memories.
I have learned so much in the last year. To be humble. To laugh. To love
openly, with no shame or fear. To have no regrets. 'Stuff' is just stuff. To
keep people and things around me that bring light into my life. To not worry
about getting fat and eat what I want!
I know my time is short. That's not an if, it is a fact. I make sure everyone
I love is kept up to date so they have no regrets. Each of us has a time to
go and we don't get to pick. But I have the luxury of knowing ahead of time.
I will be able to say I love you and good bye. And most importantly: It is
not my fault. It is not God's will. It just happens. Put on your big girl
panties and deal with it!
Posted 04/21/2008 11:24 pm by yasmin
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