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Pancreatic Cancer: My Story
By Dale Haskell
December 2005
Vital Statistics
Dale Haskell was diagnosed with ampullary
pancreatic cancer in December 1996, at the age of 46. The tumor
was 1.5 - 2.0 cm and grew over the ampullary duct area (the place
where the combined bile duct and pancreatic duct meets the small
bowel). He underwent the Whipple procedure in January 1997. Chemo
was 5FU with radiation. Care was received at the University of
Florida's Shands Cancer Center. His surgeon was Dr. Steve Vogel;
his oncologist was Dr. Robert Marsh. Dale's primary caregiver,
his wife Karen Haskell, also contributed to this story.
Background
Dale and Karen live in the Gainesville,
Florida area. At the time of diagnosis, they had been married
2 years and Karen, previously a widow, had adult children. Concurrently
with Dale's medical treatment, Karen was also a part-time caregiver
for her mother, a Parkinson's disease sufferer who in August
of 1997 came to live with them. Both were originally from New
England, but met in Florida through their church. Their faith
in Jesus Christ has been the cornerstone of their lives together,
as well as of their journey with this disease.
Karen is on the administrative staff of the City of Gainesville.
Dale is a senior biologist at the University of Florida. Realizing
a lifelong dream, they've since moved to a nearby lake community
near some of their children and grandchildren. Dale is also a
survivor of kidney cancer, basal cell skin cancer, and a prostate
scare (50 biopsies, but no malignancy) found. None of these appears
to be related to this particular illness.
Medical Journey - Diagnosis
During the spring and summer of 1996, Dale
"had two episodes of pain in the middle of my back a few
months apart. The pain from the second was so intense, it had
me down on all fours." A sonogram identified a dilated pancreatic
duct, and a subsequent CT scan showed no immediate signs of a
tumor. But with four other pancreatic cancer patients, Dale's
gastroenterologist, Dr. Stavros Diavolitsis, wanted to treat
him aggressively. So he scheduled an ERCP - the x-ray/endoscopic
procedure commonly used to investigate problems in the pancreas
and related areas.
"Thanksgiving week, the night before
the scheduled ERCP, I woke up with fever, chills, and vomiting.
The next day, upon hearing of this, my gastroenterologist postponed
the procedure. On Thanksgiving Day I could barely eat at all.
By Friday my urine was brown and my stools were white and I was
jaundiced. I went to the ER and was admitted. Finally, the planned
endoscopy occurred, revealing a tumor that had blocked the ampullary
duct. A stent was inserted, and a biopsy ultimately diagnosed
malignant adenocarcinoma.
Looking back then, Karen realized he had
been losing weight - about 25 pounds. But since he had gained
30 pounds since they'd been married, she'd thought he was heading
back in a good direction.
Speaking of awareness, neither now recalls
being aware of the tough statistics surrounding this cancer -
at least before the operation. Says Karen, "I knew it was
a big deal in general, because of folks' reactions and because
of how complex the surgery was expected to be." But not
the difficult prognosis. But she feels sure that Dale knew, even
if he doesn't now recall. He went straight to the Internet, began
reading voraciously, and grew visibly depressed. She finally
had to tell him to just stop reading. "Dale likes
to educate himself. And that's a good thing in certain times.
But in this case, it wasn't doing him a service. People were
dying."
Medical Journey - Treatment
Gainesville, home of the University of
Florida, is a huge medical community with an abundance of superior
health care facilities and professionals. And Steve Vogel, Dale's
surgeon, is a highly regarded Whipple practitioner. His surgery
was scheduled for January 7, 1997, a Monday. On the Friday before,
Dale was admitted early, due to a bout of pancreatitis.
Most Whipple patients report for surgery
the morning of the event. But on this weekend, Dale was already
in the hospital. On the eve of surgery, he and Karen do remember
a joyous, boisterous funfest with another couple from church,
game-playing out in the surgery floor lounge. A nurse looked
at them incredulously. "I can't believe you're laughing.
Do you know what a Whipple is?" She pushed on uninvited,
describing it in all its detail. "We had been in another
place" said Karen. "We sort of laughed it off, but
that brought reality back in…"
Dale spent 18 days in the hospital. "While
picking up my meds on the way home, we bumped into my gastroenterologist.
He was so happy that my situation had been operable. Two of the
four PC patients he had earlier mentioned to me had since succumbed."
Before his release, Dale was visited by
an oncologist. When Dale asked his surgeon and chief resident
about follow-up chemotherapy and radiation, they recommended
that he do both. "I was totally unprepared for that,"
confesses Karen, who had been taking one step at a time. "'But
why?' I asked the doctors, stunned. 'You just did all this
other stuff and said you got it.'" They explained
about pancreatic cancer cells and their especially virulent ability
to rebuild. "The one-two follow-up punch was crucial, they
said. So we weren't out of the woods. Even yet."
Dale flipped back into research mode, familiar
territory. He consulted various experts and reviewed several
studies, all supporting the hospital's original recommendation.
Armed with the extra confidence, Dale decided to proceed with
the recommended treatment, consisting of a bookended three days
of 5-FU, surrounding 25 days of radiation.
Treatment is a surreal time in some ways.
For those going through the experience, ironies abound. In the
(intense but) award-winning play and film "Wit", about
a cancer patient, the protagonist has considerable time on her
hands to contemplate such things. At one point, temporarily relegated
to a germ-free section of the hospital, she observes: Curious.
I am not in isolation because I have cancer. I am in isolation
because I'm being treated for cancer. My treatment imperils my
health. Herein lies the paradox.
Recovery
When discharged, Dale recalls being given
prescriptions for gas, for pain, and to avoid ulcers. A J-tube
that had been inserted during surgery allowed direct injection
of liquid nourishment into his stomach, especially during radiation/chemotherapy
when he didn't have much of an appetite.
"I kept not putting on weight.
During my stay in the hospital, certain nurses mentioned alternative
medicine for my situation. I was open to it. For a while I tried
to do macrobiotics, which had proven successful for relatives
of friends. When my surgeon learned about it though, he waved
me off, saying he wanted me eating regular food and putting on
some weight."
Except for that, and problems with gas
largely gone now, Dale experienced very few of the digestive
issues common after Whipple surgery. "To this day, Dale
eats like a horse," says Karen. "My cross to bear is
that forever, I am maybe the only wife I know destined to weigh
more than her husband." He takes only pancreatic enzymes
(Creon), Vitamin B-12, and an ulcer-preventative (Zantac). "My
fear - that I could never eat pepperoni pizza again - never materialized."
He does make his own pizzas, though, precooking/blotting
the sausage slices.
"When we reached the five-year marker,"
says Karen, "we definitely celebrated! The fear was always
really there, especially since we were being followed so closely.
Five years is just hanging out there. Whenever he went
for his checkups, I would hold my breath each time. I didn't
even realize it, till he came home and told me and I would suddenly
feel myself letting it out. So yes, we definitely do celebrate
those milestones."
Detour Ahead
By the following year, Dale's prostate
problems began, and he went under the care of urologist Dr. Chester
Algood). That June, a week after his pancreatic CAT scan, his
oncologist called him at work with bad news. That evening Dale
told Karen, "Well, the good news is that my pancreas looks
fine. The bad news is, they've found a tumor on my kidney."
After seeing the radiologist's report and the recent scan, Dr.
Algood went back to the previous CT scan and was able to see
the tumor's presence. [The radiologist had no culpability in
its having been overlooked.]
Karen - "You could've knocked me over
with a feather. I had felt so home-free. I now realized that
I had built myself a little false idol, trusting so implicitly
in the medical community. It's just a system. Dale is just another
x-ray - it's not their mother." They spoke to a radiologist
friend. What was going on here? Thank heaven it wasn't an
aggressive tumor - Dale could've been dead by now. Their
friend said, "You're sitting in a room, looking at picture
#50, you're bleary-eyed. It sounds bad, but we're human - it's
not hard to miss things." Karen suspects an added factor
is the increased specialization of physicians. "If you read
one doctor's record of Dale, he's a '48 year old PC patient';
if you read another, he's a '55-year-old man with a history of
kidney cancer'. Nobody looks at him holistically - even thought
they're supposed to, and most of us certainly assume they do."
So now, the new Big Question. Is
this the pancreatic cancer, metastasized? Or is it a new primary
tumor? Six weeks stretched out before them, until the next operation
would give the answer. To Karen, it felt like six years. "Interestingly,
Dale had a sort of cone of peace over him. But unbeknownst to
him, I didn't have that. My faith was severely tested during
that time." The system had let her down. They were supposed
to have been watching Dale like a hawk. If anything happened,
they'd be right on it. But it didn't work that way. How could
this happen?
"Then God gave me some scripture."
Philippians 4:4-8 includes the phrases: "Rejoice in the
Lord always … Do not be anxious about anything, but…
present your requests to God. And the peace of God, which transcends
all understanding, will guard your hearts and your minds in Christ
Jesus." So I wrote it on a card and started memorizing
it, speaking it during my day. I did not feel like rejoicing,
I did not feel any of those things. But pretty soon, my joy and
peace came back." And after a partial resection and re-recovery,
Dale and Karen beat yet another one. "In this case,"
says Dale, "the medical system did not ultimately fail,
since I'm still here three years later."
The Care Team
Medical - Dr. Vogel, Dale's surgeon, had
to deal with lots of Murphy's Law situations during the post-surgery
period. A good shared sense of humor helped Dr. Vogel and his
patient have a continued relationship of both fun and respect,
and went a long way toward his successful recovery.
Caregivers - "Having my wife as my
fulltime advocate during all the encounters with the medical
system was wonderfully supportive. I wouldn't want to have faced
this experience alone. In many ways, I'm sure it's harder on
the caregiver than on the patient."
Family and friends -
- Says Karen, "I think it opened their
eyes to a lot of things, like it did ours. Until you know someone
who goes through this, you have no idea how vulnerable we all
really are. It also gives them a new appreciation for life, and
that Dale's still with us."
- "My boss was very supportive,"
says Dale. "It so happened that he and my surgeon were in
the same faith community, and I clearly benefited from that connection.
When I recovered enough, my boss would also pick me up so I could
do half-days at work."
Attitudes
Karen: "When he came home from the
hospital, Dale looked like someone from a concentration camp.
It was traumatizing. I thought to myself, I have two choices
here. I can live my life as if cancer's around every corner.
Or I can just believe he's healed. I chose B."
As with other survivors, humor was key
for Dale. On his desk at work is an endoscopic picture of Dale's
pancreatic tumor. Framed. Says Karen, "He asked for the
real thing but they said no - that would've been up there, too."
Dale's Most Important Resources
The Association of Cancer Online Resources
(ACOR) - a national volunteer-led
non-profit organization linking cancer patients and their families
and caregivers with information, support and community. Their
pancreatic cancer listserv group is one of the most active and
supportive online. [Interested readers may join here: http://www.acor.org/pancreas-onc.html]
Books/tapes:
- "In hindsight, I was providentially
prepared for this experience by have just gone through a video
series at church." Partially recorded at M.D. Anderson,
it was entitled Surprised by Suffering. [http://www.Ligonier.org]
- The book, True Spirituality by
Francis Schaeffer, "emphasized giving thanks that God is
somehow using my illness for good purposes". [http://wwwlabri.org/index.html]
Gardening, a longtime passion of Dale's,
became a real lifeline during his recovery. "It was tremendous
therapy. And one day, I was pulling some garden hose over our
wood deck, and I noticed the sound was eerily like the radiation
machine as it would move into position."
Advice
To the medical team:
Karen: "There's a lot that can be made better known that
somehow never gets volunteered. Both with Dale and with my mother
[who had Parkinson's disease and after a week in the hospital
died in their home under Hospice care], there was so much we
didn't know, and that people didn't tell us. When we would finally
figure it out, we'd think 'why didn't somebody just say so?'
Someone should be a part of our medical team who anticipates
and tells us - you do this all the time - for most of us,
it's all new!"
To patients and caregivers:
- The Haskells were fortunate to have friends
who were doctors, to help answer certain questions and develop
lists of others. "The surgeon, you only see briefly. How
are we to make sense of things? Malignant. Even from the beginning,
we would have been paralyzed with that word, if not armed with
facts, and new questions to get more." If you don't have
such a resource, see if you can talk to your primary care physician
in that way. What kind of questions would they ask?
- Most important - so much so that Karen
still chokes up at the memory: "You feel like you have to
be such a trooper, because they're the sick one. You're witnessing
every bit of it, so you often feel helpless. Allow for that -
for your own humanity. Do something every so often for yourself.
Take an afternoon off. Something that will restore you. Give
yourself as much as you are trying to give the other person."
Biblically, one of Dale's personal touchstones
is now II Corinthians: 1: 3 - 7, a portion of which is: Praise
be to the God and Father of our Lord Jesus Christ, the Father
of compassion and the God of all comfort, who comforts us in
all our troubles, so that we can comfort those in any trouble
with the comfort we ourselves have received from God. Karen,
elaborating, hopes that " people out there who are newly
walking through this journey, will find refuge in some of the
things we've experienced and share here."
Author and "terminal" cancer
survivor Vickie Girard says someone once reminded her: "'Our
life comes to an end when God comes to the end of our
rope, not when we do.' Sometimes the best we can do when
we get to the end of our rope … is to tie a knot and hang
on." Dale and Karen have hung on magnificently, and God
is thankfully not at the end of their rope yet. Now, their testimony
bears witness and gives comfort to countless others.
As told to Ian MacBean
and assisted by Alison Wiley, an oral historian working with
people and organizations to recall and record their important
stories.
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