(August 22, 1999)
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A SECOND CHANCE AT LIFE |
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THE BLADE'S TOM WELLMAN DESCRIBES THE STEM-CELL TRANSPLANT THAT HALTED SPREAD OF CANCER (An obituary editorial from the Toledo Blade follows Tom's column.) |
BY TOM
WELLMAN
BLADE
ASSOCIATE EDITOR
CLEVELAND
- Two miles away, on a hill in Shaker Heights that rises above this
city's
gritty urban neighborhoods, stands the tower of St. Luke's Hospital. I
was
born at St. Luke's
On
Wednesday, April 14, as I gazed from my seventh-floor Cleveland Clinic
room at
that hospital tower, a reddish-brown substance dripped into a tube
that
entered my body. I was getting a chance for a second life - 56 years
after
the first one began.
Eight
days earlier, a team of doctors and nurses in the world-renowned clinic
had
begun a treatment called stem cell transplant.
That's
a variation of a bone marrow transplant. It involves harvesting stem
cells -
master blood cells - from the bone marrow and later, after
chemotherapy
and perhaps radiation treatments, reinfusing them into the
bloodstream.
The
idea of using bone marrow to help a person with cancer fight the disease
has
been around since the 1930s. By the early 1960s, the procedure was being
used in
late-stage leukemia, although with a low success rate. By the 1990s,
improved
methods of harvesting stem cells from bone marrow and preserving
them
enabled specialists to raise the success rate to 98 per cent for those
patients
who can use their own stem cells (autologous transplant).
The
Cleveland Clinic has used autologous stem cell transplants since 1992,
says
Brian J. Bolwell, director of the hospital's transplant program. It
continues
to do bone marrow transplants for patients who must use donated
marrow.
At 9:20
a.m. on April 14, a drip bag of peripheral stem cells gathered days
earlier
from my own bone marrow was hung by my bedside on an intravenous
rack,
the so-called "pain pole" that had been my constant companion since
being
admitted.
I
didn't feel a thing as the cells flowed into my bloodstream. At 10:40 a.m.
the
nurse unplugged the tubing. I took a short nap, then read the morning
newspaper.
For
many people with cancer, the process is something of a last chance for a
cure -
or the beginning of a new life, depending on how you view it.
"Day
Zero" in my new life had begun.
A year
ago I had no idea that I would be spending much of April, 1999, in a
hospital
room in Cleveland. I was in good health - or so I thought.
In May,
1998, however, my back began to hurt. It grew worse over the summer.
In
August, my physician, Dr. Srini Hejeebu, sent me to Medical College
Hospital
for a CAT scan, a Magnetic Resonance Imaging, and blood tests.
On Aug.
19 he told me I had a comparatively rare but dangerous form of cancer
called
multiple myeloma. It makes up 1 per cent of all reported cancer cases
and
typically is found in people 60 to 70, with a peak incidence between age
60 and
65. Its cause is unknown.
The
disease is considered a rarely curable but highly treatable form of
cancer,
according to a 1993 publication of the Leukemia Society of America.
What
occurs is that certain white blood cells, called plasma cells, grow in
abnormal
quantities in the immune system. The plasma cells tend to collect in
the
bone marrow and in the hard, outer parts of bones, destroying healthy
bone.
When the bones are damaged, large amounts of calcium are released into
the
blood.
My back
pain developed when bone loss caused four vertebrae to become
compressed.
Had the disease not been identified and treated early, kidney
damage,
another by-product of this cancer, could have followed.
Dr.
Hejeebu referred me to Dr. Peter White, professor of medicine and
associate
dean at MCO and an attending physician at Medical College Hospital.
I
underwent a series of radiation treatments designed to ease the pain in the
damaged
vertebrae. A bone-marrow biopsy revealed how thoroughly the plasma
had
invaded my bones.
Shortly
thereafter, I began a chemotherapy treatment that utilized a small
pump to
push the chemicals into my body via a chest port. It worked for four
days
every month for four months.
Later
in the fall, wearing the pump in a fanny pack around my waist, I was
able to
return to occasional work at The Blade and to attend such events as a
piano
recital at the University of Toledo.
Side
effects were comparatively mild: a bit of nausea and some hair loss. The
amount
of protein in my urine dropped dramatically - a sign that the chemo
was
working!
Despite
this good news, fear, depression, and some panic were frequent
emotions.
I had gone from being a healthy, working adult to one with a bad
back,
to one with an illness that limited my activities and had a high
mortality
rate attached to it.
I often
walked with a cane. I rented a wheelchair but never used it. I hated
the
changes forced on me by this ailment, particularly the destruction of my
normal
lifestyle and the need to constantly take medication to aid in my
recovery.
Visiting doctors and taking blood tests became part of my weekly
routine.
But I
also grew curious about multiple myeloma. I read everything I could
about
my enemy and talked to others who had it. Ignorance, I felt, would only
increase
my fear.
Friends,
colleagues at The Blade, and relatives - my wife, Nancy, in
particular,
who took time off from her job at the University of Toledo to be
a
super-attentive caregiver - rallied around me. Get-well cards poured in,
and I
received calls and visits, some from people I barely knew. Their
support
encouraged me to fight back hard against this malady.
In
October, Nancy and I began visiting the Victory Center in South Toledo,
which
supplies services for cancer victims and their families. We
participated
in a relaxation/imaging program together; Nancy joined a woman's
group,
and I participated in a men's support group. We are still active in
those
programs.
Meanwhile,
I learned that the declining protein count was no sign of sure
victory.
A handful of surviving plasma cells can remain dormant and restart
their
devilish work later.
According
to Dr. White and other cancer experts, the two best strategies
against
a recurrence were either a more extended program of chemotherapy or a
stem
cell transplant. I voted for the transplant, in recent years used
increasingly
as a strong weapon against a variety of cancers.
Step-by-step
it would mean harvesting the powerful cells and freezing them
for
later use; undergoing massive chemotherapy to destroy white cells and, we
hoped,
every last one of the cancer cells in my blood, and, finally, being
reinfused
with the stored stem cells.
We made
the decision in January to proceed with the transplant, but many
hurdles
remained before the process could begin.
Paramount,
my insurance carrier, had to approve it. The Ohio Bone Marrow
Transplantation
Consortium had to OK the procedure. And I had to be
determined
physically fit - through tests of heart and lung function at
Medical
College Hospital - for the procedure.
Moreover,
insurance requirements moved the location of the procedure from
Case
Western Reserve University Hospital to the Cleveland Clinic. That was no
loss,
because the clinic has acquired an international reputation as both a
hospital
and a research facility.
The
facility, governed by the Cleveland Clinic Foundation, was created in
1921
under the leadership of renowned physician Dr. George Crile. It
dominates
a section of the city's East Side near University Circle, with
Severance
Hall, the Cleveland Museum of Art, and other cultural institutions
nearby.
Ironically, a turn-of-the-century house once owned by my grandfather
on East
89th Street had been bulldozed 14 or so years ago to build a clinic
parking
lot.
The
clinic comprises 36 buildings, many linked by skyways. The complex
employs
820 physicians and scientists, as well as 9,142 others.
In the
clinic, approximately 220 transplants (150 autogolous, 70 allogenic)
will be
conducted in 1999, according to Dr. Bolwell. In 1995, by contrast,
150 of
the procedures were performed in the Clinic.
Elsewhere
- in Ann Arbor, in Toledo's St. Vincent Mercy Medical Center, and
at 277
other medical centers across the United States and Canada, according
to the
Bone Marrow Transplant News - the stem-cell transplant has become an
increasingly
popular weapon against various forms of cancer.
In
February and March we twice made the 130-mile drive to Cleveland to
consult
with Dr. Steven Andresen, an oncologist on the transplant team. He
said I
had a 97 to 98 per cent chance of survival, compared to the normal 95
per
cent chance, because of my comparative good health.
In
March I returned for the only surgery the procedure required - insertion
of a
catheter in my chest in a 30-minute procedure. (Ironically, the doctor
who
performed it was Mike DiSalle, whose great-uncle was the former Toledoan
and
Ohio governor Michael V. DiSalle. Mike DiSalle said he planned to return
to
Toledo shortly and work at Toledo Hospital.)
A
member of the transplant team taught me how to self-inject a drug called
Neupogen
(at roughly $600 a shot) under my skin to free the stem cells from
the
marrow and allow them to circulate into the bloodstream.
Five
days later, on March 29 at 8 a.m., the harvesting began. Nurse Sarah
Jordan
connected my catheter to two tubes that snaked over to a machine with
a maze
of tubes running through it. The machine works something like a cream
separator;
removing the stem cells from the blood pumped out of my body and
quickly
pumped back into it.
I spent
five days in 3 1/2-hour sessions hooked up to the machine, hoping to
produce
at least 2 million stem cells. Anything less would require additional
chemotherapy
to squeeze out more stem cells. A few days later I learned that
I had
generated 4.8 million cells. They were frozen and stored for later use.
On
April 6 Nancy and I drove from Toledo to the Clinic once again. The
stem-cell
transplant was about to get under way. It had been three months
since
we decided to do the transplant. I was not fearful, only anxious and
wary
about what would come next.
Within
seven hours of checking into Room H-71-36, I received a small plastic
cup
holding six pills, each of which had six smaller pills in them. This was
Busulfan,
the first dose of chemotherapy. I would take Busulfan four times a
day
until Saturday, when an intravenous drip of another chemotherapy drug,
Cytoxan,
would replace it.
Cytoxan,
a so-called industrial-strength mixture that would assuredly leave
me
without a hair on my head and potentially cause other side effects, would
be
administered for two days. The chemo kills off white blood cells,
ordinarily
one's protection against disease and infection.
After a
day's rest, on April 14, Day Zero, those harvested stem cells were
dripped
back into my body. They soon would begin to grow and produce all of
the
live components of blood - including white blood cells, red blood cells,
and
platelets, which cause clotting.
Before
the renewed growth could begin, however, my white blood cell count
continued
to drop. That's the point at which a patient is most vulnerable.
Without
white cells, there is no immune system.
To
protect against accidental contact with germs, I had a private room, a
standard
Cleveland Clinic practice. All visitors were required to scrub and
don
face masks before entering. And, any patient who ventured outside the
room
(as I did) without the requisite face mask heard about it from the first
nurse
who spotted the breach.
White
cell and platelet counts were taken daily; vitals were checked more
frequently.
Some days I needed transfusions of whole blood or platelets to
maintain
acceptable levels of both cells.
But
recovering was more than merely a numbers game played out on a computer
screen.
Losing
most of one's hair, as I did, is common, and I also had minor mouth
sores
and small episodes of nausea, vomiting, and diarrhea. Yet overall, my
side
effects were minimal, and I was able to eat solid food throughout my
20-day
confinement.
Fortunately
I had not had full-body radiation, sometimes used in the
procedure.
It can cause the equivalent of a severe sunburn, producing painful
side
effects that, in some cases, can linger for months or years.
Programs
designed to counteract chemo side effects helped. A program of
dental
hygiene, with mouthwashes and special toothbrushes, reduced the risk
of
mouth sores, a sure sign of lowered white cells. Drugs can help control
other
side effects and intravenous feeding is used for patients who cannot
keep
food down.
"Cleveland
Clinic is happy with chemotherapy-only in most cases," said Dr.
Brad
Pohlman, a member of the transplant team. He said that the clinic knows
what to
expect from the levels of chemotherapy that it applies. The small
risk of
death from radiation therapy is a concern, he said.
Physical
pain isn't the only problem for patients, who may also suffer
depression
and anxiety in response to fear of the unknown.
Fear of
the side effects, in my case, was more of a problem than side effects
themselves.
Although the patients seldom saw one another, our caregivers kept
up a
communications network. Horror stories traveled quickly. I kept
wondering,
will I be next to have to endure the bad things that I hear others
are
facing?
Barbara
Savage, a social worker, said that a three to four-week hospital stay
is
disruptive for many individuals. To deal with that problem, she says, "We
try to
give the patients as much control as possible. We let the patients
feel
like they are masters of the ship."
Walking
the halls is encouraged, with masked patients dragging an IV pole.
They
are invited also to wear street clothes if they wish, and attend support
groups
that are held weekly to talk about common problems.
"If
I can make someone laugh an hour after they've thrown up, I feel good,"
said
Maureen Jarvis, one of the nurses. She values the job of helping
stem-cell
patients, "because you get to know them over a period of time."
Being a
good listener with the ability to anticipate a patient's needs
without
even asking is a crucial skill, she says.
"We
learn a lot from you guys," said. Nurse Jarvis. She builds relationships
with
each patient. She has cried in front of patients, and hugged them, she
said.
She takes home feelings about the difficulties of life in an oncology
home.
"But
cancer's not about dying," she said. "We're trying to keep dying out
of
it."
My
white blood cells showed a dramatic increase about four days after the
April
14 reinfusion. To be released from the clinic, a patient needs to have
been
fever-free for two days and to have reached certain levels of white
blood
cells and platelets
I
departed on Monday, April 26, a total of 20 days after having been admitted.
Clearly
there is life -- and much hope -- when the doors of the hospital swing
shut
after a stem-cell transplant. But an extended recovery still lies ahead
for
patients who have seen dramatic alterations in their immune systems.
Stem-cell
patients go home to regain strength after the procedure. Weakness,
fatigue,
a lack of stamina, and occasional forgetfulness mark what has been
nicknamed
"chemo brain."
In the
hospital I had developed a minor bacterial infection and slight fever,
which
was treated at home with 10 days of an antibiotic IV drip, administered
by
Toledo's Visiting Nurse Service.
People
who have gone through a transplant typically lose their appetite.
Finding
things to eat and drink that appeal and don't taste metallic can be
quite a
task.
For the
first two to four weeks it's best not to go out into crowds, where a
sneeze
or a cough from a stranger could introduce pathogens that attack the
immune
system. I was told to avoid gardening because I might come into
contact
with germs in the soil.
In the
3 1/2 months since my transplant, I've returned to the Cleveland
Clinic
for two check-ups, visited Dr. White three times at the Medical
College
Hospital, and been checked out by two other doctors.
Minor
side effects, as expected, linger. Diarrhea is still a problem, as it
has
been ever since the transplant. A garden-variety cold and bronchitis in
July
almost turned into pneumonia, and the coughing it produced wreaked havoc
with my
damaged vertebrae. But today I work, play, and lead an almost-normal
life.
Midway
through the Cleveland visit, Dr. Pohlman told me the remission rate
for
this treatment of multiple myeloma runs an average of five years - but if
the
cancer returns, newer transplant programs may well be in place to extend
my
life.
At
Ground Zero plus, I'm not counting backward from five years. Rather, one
of the
changes that this new life has produced is more of a willingness to
deal
with things one day at a time.
To
suggest that "I obtained" this new life without a lot of outside help
would
be wildly unrealistic. So much credit goes elsewhere - to the
compassionate
and complete health care that I received, to the support from
Nancy,
my family, friends, colleagues at The Blade, and to the spiritual
support
that I received all along the way.
Nancy
turned over much of her life to my care during the nine-month period.
In many
ways the experience - performing physical duties that I could no
longer
handle and dealing with the psychological and emotional strain of
facing
a spouse who has cancer - is more draining for the caregiver than
pressures
a patient faces.
The
support and love of family and friends was expressed through a healing
service,
given for me in late February at Sylvania United Church of Christ,
which
focused concerns and made it a lot easier to go through the transplant.
If
there's one thing I learned from my experiences, it is: Don't give up. The
help is
out there, and the chances are pretty good of reaching "Ground Zero"
and
starting life all over again.
Journalist's fervor and intellect inspired others
Wellman: He harbored a passion for the Cleveland Browns and Indians.
Mr. Wellman, a native of Cleveland with a career in journalism dating to
He was a classy guy who set an example to others on how to cope with such
And when he mentioned the love and care given to him by his wife, Nancy, he