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Walter Leaman Story
December 2005
Walter Leaman lost his courageous battle with pancreatic cancer
on October 27, 2006.
Vital Statistics
Walter Leaman was diagnosed in August 2002, at the age of 59,
with Stage IV inoperable adenocarcinoma . His prognosis was approximately
6-8 weeks to live. Treatment was clinical trial chemotherapies:
Gemzar/Cisplatin; later Gemzar/Oxaliplatin. Care was received
at the University of California at San Francisco, which has an
NCI-designated Comprehensive Cancer Center. His oncologist was
department head Dr. Margaret Tempero. Walter's primary caregiver,
his wife Jean Leaman, also contributed to this story.
Background
Walter and Jean live in Danville, California, about 30 miles
east of San Francisco, where they own and operate a family business.
They have three grown children, one of whom - along with her
husband and a grandchild - lived with them during the period
of this diagnosis and treatment.
Medical Journey - Diagnosis
In the spring of 2002, stomach problems first sent Walter to
their long-time general practitioner. The next four months were
spent pursuing the prevailing theory of a developing ulcer. At
that point, a second consult with GP Dr. Lowell Kleinman led
to an endoscopy and biopsy. When those were negative, he ultimately
recommending exploratory surgery to ascertain the precise problem.
The surgeon was a highly rated one, although
not a pancreatic cancer specialist. The morning after the surgery,
he arrived in Walter's hospital room, in near-dawn-darkness,
to announce: "We were hoping we would find lymphoma, but
we didn't. I'm so sorry to tell you that you have Stage IV pancreatic
cancer. It has spread to your stomach and your liver, there is
some lymph node involvement, and I'm so sorry there's nothing
we can do for you." Then, with tears in his eyes, he left
Walter - quite literally - in the dark.
The laparoscopic surgery had indicated
a large mass protruding from the body of the pancreas and adhering
to the posterior wall of the stomach. Lesions, also biopsied
as malignant, were present in the liver as well. In a separate
conversation with Jean, the surgeon predicted that her husband
probably had about six to eight weeks to live.
Walter's mind was a blur. "How could
I go from having a little stomach pain to dying, this fast?"
Jean had a somewhat different reaction. During the long waiting
period, she had been on the web doing endless research, and had
actually come to the conclusion - from the symptoms and the location
of the pain - that it just might involve the pancreas. When she
mentioned that possibility to the gastroenterologist doing the
earlier endoscopy, he was dismissive. "But when the diagnosis
finally came through," says Jean, "I wasn't surprised."
Both describe the next couple of weeks
as a surreal transition stage - "a grieving process".
But as with many couples, they differed in their overall reactions
to the news. Asked for a word to describe his feeling then, Walter
says "resignation". Jean says "fighting-back".
Walter started writing down instructions for cleaning the pool
filter. Jean started shopping for hope.
Next stop was the San Ramon Regional Medical
Center, where they met with head oncologist Dr. Peter Wong. The
Leamans' goal by then was modest - to get a firmer prognosis
on the number of weeks left. To their surprise, Dr. Wong had
a different goal. "I want to have Walter back playing golf
within a year." It was the first positive thing either had
heard since this dire diagnosis, and tears - and possibilities
- began to flow.
Dr. Wong was aware of some clinical trials
being conducted by a colleague, Dr. Margaret Tempero, head of
oncology at the University of California San Francisco (and member
of Pancreatica.org's Science Board). "If anyone can help
you, she can," said Dr. Wong. Fortuitously, a particularly
promising trial was about to start. It involved two drugs now
common in cancer treatment: Gemzar and Cisplatin.
Medical Journey - Treatment
And as the life-giving chemo began, Walter started feeling some
hope for the first time. But most friends and family, knowing
little about this disease and all of it bad, were (despite best
intentions) not exactly surrounding them with encouragement.
By the time the trial began, Walter was in serious back and stomach
pain and had lost a total of 50 pounds. "It was no surprise
to anyone who saw me that I was very near death." They know
many of their friends were feeling they were in denial. Even
three years out, "some probably still do".
By the end of the first three weeks, nausea,
smell-sensitivity and balance problems had entered the picture.
But Walter's pain and other symptoms were subsiding, eating was
getting easier, and the positive vibes were increasing.
Recovery
Walter did not experience some
of the Whipple-specific dietary problems, since he did not qualify
for that procedure. However the disease, combined with the effects
of the chemo, did make him disinterested in eating at some points.
"It's not the chemo that kills you, or the cancer, but that
you starve yourself to death." During those periods, Jean
had to force eating, and sometimes resort to tough love: "You
can eat here, or you can go back to the hospital and get an IV.
And trust me, they won't be as nice about it as I am…"
Visualization played a helpful role at
times. During chemo, Walter would sometimes imagine his chemo
infusions as a group of ducks, cleaning up the cancer cells by
going around the edge of ponds, as he'd often seen them do. At
other times, he experienced some relief when he focused all his
healing energy, once as his grandson, then later his cat, instinctively
rubbed/kneaded his stomach. "I'll never know for sure what
worked, but I'm giving them all the credit they deserve just
for trying!"
In communicating about Walter's situation
with their young grandchildren - especially the one that lived
with them - they kept it simple. Grandpa's sick, and we're
all trying to help him get better.
"Cancer Free!" In January
2004, 16 months after the terminal diagnosis, Walter and Jean
heard the words they never expected to hear. That was the good
news. The bad news was that, as often happens, the relentless
impact of the Cisplatin had seriously affected his kidneys. The
prospect of dialysis loomed, and Walter had a dilemma. He was
in uncharted territory - the chemo regimen was keeping him alive,
but what would happen when it stopped? Doctors advised him that,
at this point, the kidneys were more likely to kill him than
the original problem. So, chemotherapy ceased and bimonthly CT
scans continued.
15 months passed. Then in the spring of
2005 a tumor reappeared, this time on Walter's adrenal gland.
Dr. Tempero resumed treatment, this time pairing Gemzar with
Oxaliplatin, another now-common cancer drug then in trials. Incredibly,
the tumor again responded. By the fall of 2005, it was gone again
- with no further recurrence so far.
So Walter remains in watch-and-see mode,
with CT scans continuing every 60 days. "By now, I glow
in the dark," he says. But two side effects are with him
as well. First, a new but not-uncommon one, peripheral neuropathy
- an ongoing numbness in the fingers and toes. Second, the damage
to the kidneys makes it dangerous to use the standard "IV
Contrast" which helps to provide clear readings on the all-important
CT scans. So while they think things look good, it's difficult
to be sure… A nephrologist is now stabilizing the Creatinin
levels, and is recommending the use of a "kidney coating"
medication (Mucomyst) that may permit the full (contrast-enabled)
CT scans to resume.
"This illustrates one of the unique problems with people
who beat the odds, probably with any disease," Jean observes.
"The medical community doesn't quite know what to do with
you next. The clinical trial saved you. But it caused other problems.
And since you're the rare exception, there are no known solutions
yet, in many cases, to those new problems."
Walter's Most Important Resources
Online sites most used included: WebMD.com; UCSF.edu; Pancreatica.org;
PanCan.org; and the searchable listserv archives at CancerCare.org.
The listserv convened by 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. Says Walter, an active user: "I wish
I'd found that earlier." Interested readers may join here:
http://www.acor.org/pancreas-onc.html
Activity-wise, Walter did get fully back
to his golf game, and spends a great deal of time organizing
tournaments for himself and about 40 other business owners and
friends in the Bay Area. His other interests seem to revolve
around like-minded others. He volunteers. He talks with people
across the country who are in his situation. He also makes himself
available for seminars and conferences, either on panels or in
what-works workshops with other survivors.
Spirituality? In a formal sense, Jean is
more connected to the specific belief in a higher being, but
both of them clearly are attuned to many things affecting the
spirit and soul. "Walter has quite an extensive network
of friends, colleagues and fellow PC families, always encouraging
them to keep up the good work. I think things like that are his
version of spirituality." He adds, "lots of people
know me and my situation. When I send out status Emails to the
group, I make a point to be jovial, but factual, and say 'to
those who thought we were done, tough luck!' And many people
have been praying for us. That's ok, too."
Obviously the experimental drug protocols
are what the medical team would point to as responsible for Walter's
success. But to the Leamans (and they think Dr. Tempero and her
colleagues would probably agree), it's because "we kept
on not giving up, kept on thinking positive. Which is not to
say there weren't times…."
The role of hope and the power of positive
thinking first entered the picture at the initial meeting with
Dr. Wong and his golf course goal. It increased with Dr. Tempero's
news about the treatment that just might work. Says Jean, "If
we hadn't heard those things, Walter would have been gone in
a very short time. If you don't find that person that instills
hope, keep looking. It absolutely can change your outcome."
Advice
For caregivers:
- Do your research. "Especially when
you're going through the pre-diagnosis stage, you should not
just wait on the doctors - they're handling loads of people and
you are in charge of just one. They're still 'the doctors,' but
it's crucial for you to try to know almost as much as
they do, so you can contribute to the solution."
- Keep taking it to the next level. Says
Jean: "That's what I had to do with every single doctor
we went to. If I didn't get the right appointment, I went to
the next doctor that would give me that appointment till I got
what we needed. I don't know why, but I always felt that if we
could get the right treatment for Walter, he just might have
a chance."
- Force eating. "And don't overly obsess
about the quality of the food. I wasted time in the beginning
cooking the recommended things, bringing them in, and having
them rejected because of the smell or other things. So I began
just asking "what DO you feel like: Chicken soup? Thai?
Ice cream? Whatever - you can have that morning noon and night,
I don't care. Unlike normal times, it's the calories that count."
- The importance of an advocate. Remember
the two very different reactions Walter and Jean had at the time
of diagnosis? When asked if it would have been any different
had Jean not been there, Walter says, "I wouldn't be here
at all if it weren't for her. She is absolutely the greatest.
If anything still does happen, I know she'll be well taken care
of…dozens of my friends are ready and waiting to marry her
and take over where I leave off!"
Advice for patients and caregivers
alike comes in the form of this cautionary tale. In this current
stage of CT scanning problems, Walter's medical files have been
prominently marked "DO NOT USE CONTRAST - POTENTIAL KIDNEY
FAILURE." Once, very recently, after the IV was inserted
and he was lying horizontal about to enter the tunnel, Walter
said "just making sure - you're not using contrast in that
IV, are you?" They were. And everyone was thankful
that he spoke up. Medical professionals are still human. Don't
assume - protect your own self.
Friends have been a godsend to this couple.
Especially so are those who, knowing that it's not over till
it's over, keep the offers coming even after months, even years,
have passed.
Advice to friends - Ask "what's on
your list today?" While friends and neighbors want
to help, they often aren't sure how. A common way is to say Call
me if you need anything. Seemingly similar, but importantly
different, was one friend's way of putting it: What's on your
list today…what can I do to help with something? "Many
times, what was on my list was something non-medical and seemingly
unimportant (like getting the oil changed in the car, or picking
up the dry cleaning). I would have never thought to bother others
with those. But in fact, at the time, those things might be weighing
heavily, as we were burdened with other priorities." An
offer stated that way can also reassure the family that indeed
"today is a particularly good day for me to help you."
Well-meaning things not to say? Jean's
nomination is "How is he, really?" "Also,
don't assume that chemo means that we can't have any fun. We
aren't always 'sick'. We still like to go out to dinner sometimes
too!"
Laughter is often the best medicine. Says
Jean, "that's what I had to have, for me. Walter had his
meds, but I had nothing to take! I had to have an outlet, every
day, to take me away from the reality. TV, a joke, special friends
- laughter."
Two stories demonstrate the power of laughter
for the Leamans:
When they first learned the details of
this illness and the likely financial implications, they realized
that some serious scaling-back was in order. Jean took matters
into her own hands and began the process, by actually having
a yard sale to clear out lots of items they wouldn't have room
for in the event they needed to downsize to a condominium. By
the following spring, however, things were looking up, and when
it came time for Walt to prepare the little plot for his annual
tomato garden, he couldn't seem to find his hoe. "Have you
seen my hoe anywhere?" he asked Jean - who sheepishly replied,
"Oops…sorry about that!"
Shortly before diagnosis, Walter had finally
been persuaded to shell out a lot of money for hearing aids.
In the early post-diagnosis period, there were of course some
dark and scary days. "That's when Jean would tell me that
I'm not going anywhere until we get our money's worth out of
those darned hearing aids."
As told to Alison Wiley,
an oral historian working with people and organizations to recall
and record their important stories.
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