Mary DiPaolo Story
August 2006
Background
We had just moved from Key West
Florida, where I was born and raised, to a really nice house
out in the farmlands of West Florida. I have two children; my
oldest is Michelle, who has my grandson Glynn Raymond Archer
IV. They still live in Key West, but come up to see my husband
(their Father) every few months. I also have a son, Anthony,
who lives about 1/2 an hour away from me in one of my rental
homes. He has a son, Tre' Anthony who just turned a year old
last week. My husband, Dennis and I have been married for over
37 years and he has been my savior throughout this time. He changed
the bandage over the feeding tube and cleaned the site and redress
it. He is my Angel.
Diagnosis
I was diagnosed in January 2005
at the age of 54. It was not a clear diagnosis as I had to repeat
the CT Scan twice and both times it came back inconclusive. I
had been told the prior month that I had a mass in my pancreas,
but it was totally enclosed within the head of the Pancreatic
duct. God was with me all the way, because when they sent it
away for biopsy, it came back as a BENIGN tumor. I did not have
to chemo or radiation and I thank God for that every day.
What took you to the doctor in the first
place
When we moved up to the Tampa Florida
area, both my husband and I went to Dr. Jacobson as our primary
physician. This was in July of 2004. Dr.J. noticed that the left
side of my mouth was drooping somewhat, so he sent me for tests
for a stroke. Come to find out I have had 3 strokes and didn't
even know it. After that was confirmed, he had every test in
the world performed on me, but no one could really read the blood
test, other than that I had something by my pancreas.
How you were told, how you told loved
ones
Actually, I wasn't told until after
the Whipple Surgery, because the tumor was inside the Pancreatic
Duct. When they sent it off for biopsy I was still in intensive
care at the hospital. That evening my surgeon came in and told
me the results, that it was cancer, but it was benign. I got
my husband to call my son and daughter and my two brothers to
tell them. They just couldn't believe how lucky I was.
When/how you learned "the statistics"
At the same time that my surgeon
gave me the diagnosis, he explained that it is very rare, the
type of cancer that I had. He told me that there was a 1% chance
of that happening, but explained to me the full extent of the
surgery and that the recovery would be long and painful. He wasn't
kidding.
Your initial response to diagnosis,
and that of your family/friends
We were all so thankful that I
didn't have to undergo Chemo and Radiation that none of us realized
what a toll the surgery would take on my body and mind.
What facility; what primary doctors
Dr. Walsh, another doctor that
I had seen was instrumental in getting me to the right Surgeon,
Dr. Michael Albrink. He is a brilliant surgeon and a true southern
gentleman. The operation was at Tampa General where he is an
Attending.
Surgery
The surgery was a Whipple Procedure,
where he removed my gallbladder, spleen, the head of the Pancreas
and part of my stomach. Then reconnected everything that was
left.
Experience (physical, emotional)
I doubt that I can put into words
the emotional experience of being in that hospital. Suffice it
to say that I would not let my husband go home until I knew which
nurse would be on duty that night. As far as the physical experience
it was something I never want to go through again.
Side effects/complications
The worst side effect, if you can
call it that, was that I had no appetite at all. They had me
on a feeding tube, but even in the hospital the nurses couldn't
get it to work. But they sent me home with it and within a week
it had fallen out and I had to go back to the hospital to have
it reinserted. That happened 3 times and I got down to 84 lbs.
Finally I had to demand that they put in a tube that would fit
the feeding IV. After that it stayed in until February of this
year.
Dietary - Exercise
I had to eliminate by trial and
error the foods that I could tolerate. I was still on the feeding
tube,but knew that I had to start eating more. As far as exercise,
I started to garden when we moved here, so when I was able to
I went back to it. It kept my mind occupied and exercised my
body also.
Rediagnosis
Not yet, I go for more test this
coming February (2007).
Experience
I don't know yet.
Medical Team
My Surgeon, Dr. Albrink, and his
many minions of trainees. Tampa General is a teaching hospital
so I did not see the same people all of the time.
Primary Caregiver
My Husband. He took off 3 months
of work to be there for me. I don't think I could have survived
the hospital if he had not come every day for 14 days.
Other Family
My daughter was with me for the
surgery and for 3 days after, then she had to go home to her
family and job. She is the best. She still comes as often as
she can. My son came everyday for about a week, but Tampa is
about an hour from where he lives and works.
Friends, Neighbors, Strangers
Several of my friends from Key
West came up to see me while I was in the hospital, and I can't
even remember how many perfect strangers stopped in to give me
a kind word.
Online Resources
The Pain Message site, Johns Hopkins
message board and my favorite Made in Heaven Queen message board.
Books
I don't read anymore since I had
to get glasses. I miss it because I love the written word.
Attitudes
Without exception, prayers, comfort,
and support.
What your doctor would say
He did say that I was a fighter.
I guess I am.
What you say
The same. I wasn't going out without
a fight.
Importance of hope
Hope is one of the most important
feelings, if you give it up, you might as well give up on yourself.
Importance of humor
You just can not lose your sense
of humor. Even with all the things going on in that hospital,
I could still see the humor in it.
Importance of spirituality
Without God in our life, our life
means nothing. God was with me every step of the way. He is with
me now. I feel sorry for people who do not believe in him.
Advice to other patients
Stay strong and fight this disease,
you can do it.
Advice to primary caregivers
To my Husband, God Bless you.
Advice to well-meaning others
Just stay positive in your attitudes,
don't make the patient feel even worse.
Thoughts
This Journey, even if it is not
over yet, has changed me in so many ways. I now wake up each
morning and thank God for one more day. I go out of my way to
be helpful to others, as I know how it felt to be on the receiving
end. I look at life through new eyes now, I think before I speak,
and I take great pleasure in the little things in life.
As submitted to Pancreatica.
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