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Richard Philbin Story
December 2005
Vital Statistics
Richard Philbin was diagnosed with pancreatic adenocarcinoma
in February 1998, at the age of 65. The tumor was 1.5 cm and
found in the head of the pancreas. He underwent the Whipple procedure
a month later. Chemotherapy was 5FU. Care was received at the
Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire, in
its NCI-designated Norris Cotton Cancer Center. His surgeon was
Dr. Richard J. Barth; his oncologists were Dr. J. Marc Pipas
and Dr. Herb Mauer. Richard's primary caregiver, his wife Ginny
Philbin, also contributes to this story.
Background
Richard and Ginny live in Quechee, Vermont - a small vacation/resort
community, luckily just over the state line from the Dartmouth
Center. They've been married almost 49 years and have four grown
children, all living elsewhere. Richard, now retired, had several
different careers - ranging from comptroller of a subsidiary
of a large health care company, to software trainer of a small
family-owned computer firm, where he was working when diagnosed.
Ginny is a dietitian with a nearby Veterans Administration hospital.
Medical Journey - Diagnosis
The all-important early diagnosis was aided by two factors: a)
noticeable jaundice symptoms; and b) a pushy wife! After a few
days of putting up with Richard's own first strategy for dealing
with the symptoms (drinking lots of water??), Ginny strongly
suggested he move on to an actual visit to their family physician.
Dr. Michael Kilcullen not only was an excellent diagnostician,
but his connections to Dartmouth-Hitchcock also expedited the
intervening testing process and led to prompt action.
Dr. Kilcullen made his initial tests, followed
a few days later by his preliminary diagnosis: that there was
indeed a spot on the pancreas, though more specialized tests
were needed to learn more. He delivered this news over a pay
phone on Friday the 13th (!), as Richard watched Ginny disappear
up the airport security line to go visit a sick relative. "Seeing
her - my rock - getting on that plane was the hardest part of
this whole experience."
Richard went home alone, and straight onto
the Internet. Despite the indefinite news, cancer was already
in his mind. After a period of pulling up sites with dire details
and statistics, he allowed himself to think the unthinkable:
I might actually die from this...
"I'm someone who believes that death
is a part of life. But I've also always had the philosophy -
particularly in regard to health - not to worry about it until
somebody who's an expert tells you to worry about it. So I just
sort of put it out of my mind." But he did manage to say
a prayer that night: "Lord, you've given me 65 years of
a beautiful and healthy life. If this is what you want, just
help me get through it gracefully." Hedging his bets though,
he couldn't resist throwing in a PS: "But if you want to
work a trick, I'm good for that too!"
The following week, Richard met for the
first time with pancreatic surgeon Richard Barth. He confirmed
cancer, but again needed more tests for a complete diagnosis.
Richard had a comfortable feeling about him from the start, and
was even more comfortable after hearing the reassuringly long
list of Whipple procedures he had under his belt. Richard said,
"Doc, my wife doesn't even know I'm here yet … I've
got to know what the worst thing that could happen is."
The doctor replied, "the worst? You could have months,
not years to live." In typical fashion, Richard thought:
well, months is better than weeks, I guess! But still,
his drive home included a stop at a funeral parlor to pick up
their brochure and price list. You can't be too careful…
Richard went to great lengths to keep the
full story from Ginny until she returned home from her trip.
"Actually, I had been under the impression he was having
problems with his gall bladder. I had had gall bladder surgery
myself, and I knew his problem was in the same general area."
So it was in their driveway several days later that Richard first
said the words "pancreatic cancer." But Ginny had no
background in the special attributes of this particular disease.
And "he said it so nonchalantly" (as if, it's not
the gall bladder, it's the appendix…), that she remained
blessedly in the dark for a brief while longer.
Ginny's awareness of the truth dawned while
sitting in Dr. Barth's office, when they began working with Richard
to get his jaundice under control and discussing the possibility
of a clinical trial. She had been exposed to the statistics by
then, and this was her lowest point. The jaundice treatments
took precious days and entailed some setbacks. It was not a fun
time, and everyone around became somewhat somber, including -
uncharacteristically - Richard himself. "I was aware my
family members were talking about me. They thought I was going
to die. So did I, really. Things were not going according to
plan."
The clinical trial option was presented,
and Richard seriously considered it - partly because of his strong
interest in seeing his own experience potentially help others.
But the study would involve delaying surgery to engage in an
experimental radiation treatment. After a second opinion, he
decided instead to capitalize on the good fortune of early diagnosis,
and to proceed immediately to surgery. As it turned out, that
clinical trial did yield highly promising results.
Medical Journey - Treatment
Richard underwent the Whipple procedure at Dartmouth-Hitchcock
in mid-March of 1998. The original plan had been to do some radiation
during surgery, but the painstaking removal of his unexpectedly
damaged gall bladder extended the procedure to the point where
that could not happen.
Dr. Barth came in after surgery, delivering
the news everyone wants to hear: tumor out, clean margins, no
lymph node involvement; big success. Says Richard: "That's
when everything changed. Pretty much from that day forward, I
forgot about dying, and got on with living."
He was in the hospital nine days, on nutrition
IV, transferring through stages to regular food within several
weeks. As with many patients, he also had one post-operative
infection, and recurring nausea. More unusual was his tenure
with the nausea, which continued several times a week from post-op
through the end of chemo, over a year later.
But in general, Richard maintained his
positive outlook. "I'll never forget a day soon after I
returned from the hospital. An early New England spring day,
65 degrees, with sun on the trees and snow on the ground. I walked
out onto our deck and surveyed the beautiful landscape. I suddenly
found myself crying, for the first time, feeling so glad to be
alive. I still get chills thinking of that."
A month after surgery, treatment began.
It consisted of a month of radiation, bookended by chemo the
first and last day, was followed by a month's rest, and then
a full year of weekly 5FU chemotherapy. Nausea followed him for
that entire year. Ginny, given her profession as a dietician,
especially worried about whether any nutrition was getting through
his system. "He said he felt good. And he thought he looked
good. But actually, and I didn't tell him this till years later,
he looked emaciated. Like death warmed over. No weight was going
on, he had months of chemo yet to go, and I felt like he was
going to starve to death before we get there." Finally though,
the chemo stopped, the nausea stopped, and "the sun came
out."
During treatment, Richard did not explore
alternative therapies, for the most part.
However, a book on visualization turned out to be mildly helpful.
"I'm not generally into such things. But during my chemo,
I did experiment with imagining exactly how it was working inside
my body to fight the cancer." Nothing too remarkable on
the nutrition and exercise fronts, either. Richard and Ginny
had been keeping a pretty healthy lifestyle before the surgery,
and continuing the good food and a daily multivitamin were the
extent of the recovery plan. Unfortunately a mid-distance running
regimen, which Richard had long enjoyed, has been challenging
to resume post-operatively. But their rustic property provides
ample opportunities for outside exercise of the chore variety.
At the end of chemo, many people experience
a new wave of anxiety, as that long-term form of ammunition against
the cancer is suddenly removed from the arsenal. Richard, already
long since committed to beating this disease, had no such problems.
To him, the end of treatment felt more like graduation day.
The Care Team
- Medical - Richard knows he's lucky to
have lived near a top-notch medical center. About surgeon Dr.
Barth, he says "I would walk through fire for that man.
Great manner, personable yet serious. Truth-telling." He
felt similarly confident in his oncologists and his family physician.
And the home care members of the medical team were no less important.
About one visiting nurse, Vicki, Richard and Ginny both say "when
she came into the house, things got better."
- Family - Richard and Ginny are nearing
their golden anniversary, so have a long history of supporting
each other. And within minutes of a first call to a cousin, word
of the diagnosis was telegraphed to their large extended
family around the country. The Philbin children, spread out across
the country as they were, were also supportive, and able to be
present during the hardest stretches of surgery and early
treatment.
- Friends/coworkers - Ginny was in charge
of responding to the outpouring of cards, especially from their
church friends. "The sentiments were beautiful. I get a
catch in my throat when I think about it." Whatever one's
"community", the people you hear from are often a surprise.
(Also, sadly, the people you don't.)
- A circle of neighbors surrounded the Philbins
during that first year, taking on driving and many other duties
as needed. Richard's small company had always had a culture of
caring about its employees, and he got all-important empathy
and a "whatever you need" assurance from the owner.
In fact, during Ginny's initial trip to Florida, Richard had
to call in such a favor, asking him to do the 6-hour emergency-driving
run in a snowstorm to pick her up on return. The owner immediately
complied, got his wife on board too, and "did something
I've never seen in the ten years I've known him. Left work early!"
The Kindness of Strangers
Richard and Ginny met and befriended Sister Immaculata on an
earlier trip to Europe. She was one of his first phone calls
after his diagnosis, as he asked her to pray for him and told
her he intended to put up a good fight. "Oh, no, Richard,
that's not the right attitude. You have received a beautiful
gift from God." She encouraged him to figure
out exactly what he was intended to do with this gift. This became
the foundation of many positive vibes for Richard, and the impetus
for him to spread the word broadly about his situation, in order
to help others. "When some people get cancer, they try to
keep it relatively quiet. I told the world."
During the first year, the bouts of nausea
Richard endured didn't always come at convenient times. One day
he was overcome while awaiting pickup in the driveway of the
hospital. Suddenly, he became aware of someone standing over
him, putting one hand on his forehead and the other on the back
of his neck. He looked up at not a nurse, but a mere passerby.
Incredulous, he said "that's exactly what my Mom used to
do for me…"
Attitudes
Richard imagines his doctors would probably attribute
his successful recovery to:
early diagnosis, tumor location, and good physical condition
of the patient. Richard himself attributes it to: a solid
spiritual connection, an excellent medical team, the strong support
of family and friends, and …hope. "It's like
a chair. With four legs, you can't knock it over easily."
Not that Richard was never scared. He cites
exactly two brief but trembling times. Once was on that fateful
Friday the 13th, when he first went home to the empty house and
the computer. The second was at church, right before surgery.
"I remember thinking, please, not here, not now.
But both times, utter calm came over me almost immediately, and
I was cool again. Those were the only two times I ever feared
dying, and they didn't last long. I don't even know if they count,
they were so short. Before all this happened, if someone had
asked me what I would do if I had only a couple of months to
live, I think I would have said my reaction would be that I would
fall apart. But I didn't. Now, I will never, ever, ever be afraid
to die."
"Some people get cancer and say 'why
me?' I've accepted it. Why, I don't know. It amazes me, looking
back… I think it's partly my lifetime experience: when I
accept things and then set about addressing them, it has always
worked out."
For Richard, the appreciation of humor
- a lifelong attribute - became an absolutely crucial part of
his journey with cancer. Here are two of the many stories:
During the somber pre-surgery days, Richard
happened to meet Stephanie, a hospital employee whose nametag
announced a novel specialty, dosimetrist. [FYI, this turns out
to be the person who looks at a patient's x-rays and marks the
body, so that after surgery the technicians can ensure subsequent
x-rays optimally line up.] Stephanie's bubbling good humor, and
Richard's teasing about her weird job title, led to a spontaneous
musical duet of "Mares Eat Oats and Does Eat Oats and
Little Lambs Eat Ivy". A you-had-to-be-there experience,
perhaps. But "that was the first belly laugh I'd had in
weeks. She didn't just brighten my day; she brightened my life."
Richard is a "practicing" Irishman
with a jaunty white beard, which on St. Patrick's Day he always
dutifully dyes green. When Richard woke up from the Whipple,
it was difficult to talk, so he motioned his daughter to give
him a nearby pencil and paper. "What day is it?" he
wrote. "Still March 17th", she replied. Noticing that
the pen she'd passed him was coincidentally a green felt-tip,
he immediately proceeded to do what the date required: color
that beard.
Richard'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 ] Says
Richard, "I didn't really have anyone to talk to, until
I got onto the ACOR listserv. In fact, some of the things I protected
my wife from, I was able to do because I had that other
resource."
A "real time" support group convened
at the medical center, for that same audience, provided a network
of like-minded others right in the same geographic vicinity.
And sharing his experience and advice with other patients, whether
in person, by phone or online, has been its own personal resource
in helping Richard deal with his situation.
Books: The Four Things That Matter Most
by Dr. Ira Byock and Letting Go: Learning To Live While Dying
by Morrie Schwarz
Cancer Buddies: Two fellow patients played
a special role. Richard first met Greta and Carol through the
ACOR listserv group, but also communicated with them off-list
and (in the case of Carol and her daughter Jan) even in person.
Comparing and learning from their similar journeys was a unique
form of help to him with his own, and the subsequent passing
of both women was deeply and personally felt.
Advice
- To fellow patients and caregivers - Don't
be afraid to ask for help. For patients who have long been helpers
themselves, it seems this act can be extra hard.
- To caregivers - Don't get to the cemetery
before the patient does. It's easy to sense grim foreboding in
loved ones, and whether the patient shares that feeling or doesn't,
it makes their job of healing tougher.
- To the medical team - "Many of them
(Dr. Barth excepted!) treat you like you don't know anything
and you don't need to know anything. If somebody has questions,
answer them as fully as possible. Treat us like your partners."
- And last but certainly not least, for
those docs: "Don't give up on us."
"The stats on pancreatic cancer are
devastating, and I tell people to always remember that you are
a 'statistic of one' and where you stand in that bell curve could
just as well be on the 'good side' as opposed to the high mortality
group. More important, I tell them to never forget that 'you
have the cancer; it doesn't have you.' In other words, don't
let the cancer interfere with living your life to the fullest.
Attend to it certainly, but also focus on what's really important."
One might think Ginny's profession in dietetics
would make her more prepared for this experience in her own family.
But she notices a valuable difference now. "I feel so much
more comfortable around sick people than I used to. My patients
often don't just talk about food, but about how their life is
going. I'm now more understanding when they feel they have to
give me the whole picture, because I've been there."
For Whipple patients in particular, Richard
has "a certain pill I would recommend … Patience.
It's difficult. You wonder if you're ever going to feel well
again. But every day you feel just a little bit better. You can
complain, or you can try to focus on that 'little bit better'.
All of a sudden one day, you realize … You're back! Firing
on all cylinders."
Richard signs off with an observation that
sounds hard to believe but speaks volumes about his life-saving
spirit. Telling this story has helped him "relive the
finest year of my life (so far!), the year of my diagnosis and
recuperation. Sister Mac was right - I 'received a beautiful
gift from God'. And I'm enjoying it all over again."
As told to Alison Wiley,
an oral historian working with people and organizations to recall
and record their important stories.
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