Winter-Spring 2019

omrf.org

Winter/Spring 2019

FEATURES

8

MY CANCER JOURNEY

As a physician and researcher, OMRF President Steve Prescott thought he knew cancer. Then he became
a patient.

16

A NAME FOR HIS PAIN

He’d never heard of sarcoidosis. Then the rare disease struck David Key, stealing his health and replacing it
with suffering and disability.

Chartered in 1946, OMRF is an independent, nonprofit biomedical ALSO IN THIS ISSUE 7
research institute dedicated to understanding and developing more
effective treatments for human disease. Its scientists focus on 4ALSO IN THIS ISSUE VOICES
such critical research areas as cancer, diseases of aging, lupus and Debbie Craine donates
cardiovascular disease. FRESH AIR
Using 3D models to from the heart
CHAIRMAN OF THE BOARD Len Cason, Esq.
PRESIDENT Stephen Prescott, M.D. tackle lung illness 22
EDITOR-IN-CHIEF Adam Cohen
MANAGING EDITOR Shari Hawkins 5 YOU’RE DOIN’ FINE!
ART DIRECTOR Jenny Lee How “Oklahoma!” gives
GRAPHIC ASSISTANT Rachel Smith ASK DR. P
WRITER Ryan Stewart Where are the cures back to OMRF
PHOTOGRAPHERS Brett Deering, Dan Morgan, Steve Sisney
for joint pain?
405-271-8537 • 800-522-0211
[email protected] 6

© 2019 Oklahoma Medical Research Foundation. A PIONEER PASSES
All rights reserved. Reproduction in whole or in part Dr. Morris Reichlin
without permission is prohibited.
changed lupus research

ON THE COVER: Steve Prescott. Illustration: Sean McCabe. Photo: Brett Deering.

LAB LIFE

A Breath of Fresh Air

Using 3D models to tackle respiratory illness

Respiratory syncytial those with weakened OMRF scientist human lung into a dish in
virus is the leading cause immune systems or Dr. Susan the exact right organization.
of pneumonia worldwide. conditions like asthma, the Kovats (left) Then we can test how the
It takes a particularly heavy virus can be dangerous and and OSU cells respond to pathogens
toll on children, infecting even deadly. bioengineer in something that functions
more than half in the first Dr. Heather like a real lung.”
year of life and nearly 100 Working with colleagues Fahlenkamp
percent by age 2. at Oklahoma State have developed By introducing immune
University and the a 3D model to cells from both infants and
“RSV causes more University of Oklahoma study RSV, a adults into the lung model,
frequent and more severe Health Sciences Center, severe illness in the scientists can study
infections in infants, Kovats has been infants. what differences occur at
compared to adults, and investigating why the the point of infection. And
it can be very serious in disease strikes children they can do so without
children, even requiring more frequently than exposing human subjects to
hospitalization in some adults—and why it can hit the virus.
cases,” says Dr. Susan some kids so hard.
Kovats, who studies the In addition to its safety
virus in her lab at OMRF. To do so, the researchers advantages, says Kovats,
“It’s thought that the are using a novel three- the 3D model is actually
neonatal immune system dimensional model a better research tool
is not very strong, so a lot developed by Dr. Heather than working with human
of babies can be especially Fahlenkamp, an OSU subjects. “People show up
susceptible to RSV.” bioengineer. It’s made up sick, and doctors have no
of human tissue, and it’s way to know when they
The virus is highly designed to mimic how our were first infected. This
contagious and can run lungs work. gives us a lot more control
rampant through daycares to learn exactly what goes
and schools. While most “It’s almost as if we have wrong and how to go about
children experience only a functional artificial lung,” fixing it.”
cold-like symptoms, for says Kovats. “We can put
all the correct cells of the The researchers hope to
reveal what predisposes
infants to severe RSV
infection and, ideally, to
create a launching pad for
potential therapies down
the line. The “lung in a Petri
dish” approach could also
prove valuable for the study
of other lung infections.

“RSV is where we are
starting,” says Kovats,
“but this model also could
be used to study the flu,
allergies and other lung
problems in ways we’ve
never been able to before.”

4  OMRF Findings

BODY WORK found the fat molecules
themselves may also
Arthritis Anxiety cause osteoarthritis. The
good news here is that
Dear Dr. Prescott, even moderate weight
loss of 10 pounds or so
Over the past 10 years, arthritis has affected every joint in my can significantly reduce
body. I’ve seen my regular doctor, a rheumatologist and even other the pain and disability
specialists. The diagnosis is always the same, and it almost seems associated with arthritis.
they expect it to happen as we get older. Why is there not more
research on this debilitating condition that affects the vast majority A multitude of studies
of people as they age? have tied arthritis to
Bob Coleman, Granbury, TX inflammation. One
way to try to reduce
Illustration: Matt Chinworth inflammation is to
minimize or avoid foods
Ask Dr. P never be enough The vast majority believed to cause it,
research. And scientists of those funds go like sugar, saturated
I can agree. Still, when it directly to research on fats, alcohol and refined
understand comes to arthritis, more arthritis. While those carbohydrates. Indeed,
your frustration. research is occurring projects haven’t yet at OMRF, Griffin recently
than you may know. found a cure, they found that in laboratory
Arthritis is probably the certainly have yielded mice, diets high in carbs
most common disease An entire portion of interesting insights that or refined sugar—even
among older adults. the National Institutes can help people with if they didn’t produce
The Arthritis Foundation of Health—the osteoarthritis. weight gain—increased
reports that almost half National Institute of the animals’ rates
of people over the age of Musculoskeletal and Skin First off, research of osteoarthritis.
65 have been diagnosed Diseases—is devoted to indicates that one of
with arthritis. There are researching the causes, the most important Finally, research has
more than 100 forms of treatment and prevention contributing factors shown it’s important
the disease, with the of arthritis and related to the disease may to stay active. You
most prevalent being conditions. Each year, be fat. Extra pounds may have to shift from
osteoarthritis, which that federal institute increase stress on activities that are heavy
results, at least in part, spends more than $500 joints, and OMRF’s Dr. on pounding (jogging,
from the accumulated million toward that goal. Tim Griffin has also aerobics) to things that
wear and tear on our go easier on your joints
joints. It sounds like Research indicates that one of the most (swimming, biking).
that might be what’s important contributing factors to the Strength training is
afflicting you. disease may be fat. Extra pounds increase also key, because weak
stress on joints. muscles can’t support
From a patient’s compromised joints.
perspective, there can
Obviously, nothing
here is a silver bullet.
But you might try some
of these approaches.
In the meantime, we’re
going to keep working on
finding new ones!

Winter/Spring 2019  5

LEGACY

Saying Good-Bye to a Pioneer

Dr. Morris Reichlin developed a watershed test for
lupus and reshaped research at OMRF

Autoimmune disease Throughout his 28 “ If it meant
research was in its years at OMRF, where he something to the
infancy in 1981. That was became vice president patient, then it
the year Dr. Morris “Moe” of research, Reichlin meant something
Reichlin packed his lab continued to treat people
at the State University suffering from lupus. “He ” to me.
of New York at Buffalo cared about his patients
to start a new scientific as much as he cared Photo: Steve Sisney
program at OMRF. for them,” says OMRF
Vice President of
A rheumatologist, Clinical Affairs Dr.
Reichlin gained Judith James.
prominence when he
discovered antibodies Indeed, it was the
associated with lupus, needs of the people
one of more than 80 suffering from
diseases that cause the lupus that guided
body’s immune system Reichlin’s scientific
to attack itself. The test inquiries. “If it meant
he then created—the something to the
Reichlin profile—provided patient, then it meant
physicians with an something to me,” he told
important tool to assist The Rheumatologist.
them in diagnosing lupus
and other autoimmune Upon his retirement
diseases. Its development in 2009, he was named
marked a milestone in an OMRF Distinguished
diagnostic medicine. Career Scientist. In the
years that followed, he
At OMRF, Reichlin remained engaged and
built the foundation interested in science as
into a leading center long as he was able.
for researching and
treating lupus and other This past summer,
autoimmune illnesses. Reichlin passed away
OMRF scientists have at the age of 84. He is
since played a role in survived by his wife,
identifying 65 of the 101 Marianne, two children
genes known to play a and a grandchild. His
role in lupus. Thousands legacy includes nearly 500
of patients have received scientific papers and more
treatment in OMRF’s than 100 scientific and
clinics to help them clinical trainees, a group
manage their conditions. that includes James.
The program Reichlin
created now employs “He was a master
more than 150 staff clinician, mentor and
members, and its clinical scientist,” says James.
focus has expanded to “Many of us wouldn’t be
include treatment for rheumatologists today
multiple sclerosis and without Dr. Reichlin’s
rheumatoid arthritis. influence and the example
he set for us all.”

 

6  OMRF Findings

VOICES

When my husband
suffered a fatal heart attack, one
of his friends gave a donation in his
memory. I looked up OMRF’s website
and appreciated knowing you’re doing
heart disease research. Bob would

have appreciated it, too.

Debbie Craine

An interior designer in Tulsa, Craine has continued to
donate to OMRF since her husband’s death in 2014.

Winter/Spring 2019  7

I thought I was cured. So, I went

my life. I got check-ups Occas

fine. After a few years, iT was p
eveR happened. Then, doctors fo
began the most important chapt

8  OMRF Findings

t back to the business of livinG Photo: Brett Deering
sionally, and everything seemed
prettY much as if nothing had

ound a new cancer. and so
pter of the real journeY.

By STEVE
Prescott

Winter/Spring 2019 9

I didn’t expect to be here to
write this column.

When I say “here,” I don’t mean
OMRF or Oklahoma. I mean here,

as in, on this earth.

You see, I’ve been diagnosed For me, this approach made a roller coaster this disease
with cancer. Twice. perfect sense. I’d processed the is. Up one moment, down the
risk—minimal, I thought—and just next. A jarring turn here, a rapid
The first time was no big deal. moved on to picking a treatment. acceleration there. You think the
I know it sounds like I’m being a After talking to my doctor and ride’s over, and right then, it hits
tough guy, but that’s not the case. mulling over my options, I opted you with a stomach-churning drop.
I’m just being honest. for radiation. The only thing you know is that
you never know what’s coming
As a physician and someone The procedure I picked is around the next bend.
who’s spent decades of my life called brachytherapy. A urologist
researching cancer, I like to think and radiation oncologist implant During a business trip, I noticed
I have a pretty good handle on radioactive “seeds” in your that lymph nodes in my groin
the disease. So, when my doctor prostate. The idea is that over were swollen. When I returned
told me in 2011 that I had prostate time, the radiation generated by home, I made an appointment
cancer, I didn’t freak out. I knew it the seeds wipes out your cancer. with my urologist. He measured
was completely curable. my PSA level, and I was relieved
It was an outpatient procedure, to learn it was still zero. When
Prostate cancer is a very and I was under anesthesia for an he did a CT scan, the only things
common form of the disease— hour or two. By that afternoon, it showed were those inflamed
even more so if you have a family I was up and walking around. lymph nodes, along with a
history, which I do. My dad was In the ensuing weeks, I didn’t slightly enlarged one in my chest.
diagnosed two decades ago and experience any complications. Everything else was fine.
received treatment. He’s still alive Months passed, and my PSA level
today at the age of 97. (a measure of prostate health; Lymph nodes serve as a
the lower, the better) dropped sentinel system for the body. They
Of course, no one chooses to basically to zero. filter out “bad” cells; when they’re
get cancer. Still, among all the swollen, they’re telling you that
possible forms of the disease, I thought I was cured. So, I went something in your body isn’t right.
prostate cancer would be at the back to the business of living my Usually, it requires more detective
top of my list. Yes, you have to life. I got check-ups occasionally, work to discover the exact nature
be treated. But the outcome is and everything seemed fine. After of the underlying problem.
almost always positive. More a few years, it was pretty much as
than 90 percent of cases are if none of this had ever happened. With my history of cancer, I
completely cured. immediately suspected some
That all changed in the summer sort of recurrence. Specifically,
I didn’t tell anyone at work about of 2017. I worried the prostate cancer
my diagnosis. I barely spoke about had come back, only this time
it to anyone else, either. My wife, If nothing else, my experience I worried it had metastasized—
Susan, was puzzled by this, but I with cancer has shown me what spread—to my colon. The very
thought it best not to cause worry
where it wasn’t warranted.

10  OMRF Findings

thought filled me with dread, and growing in my urinary tract, just In other words, more bad news.
with shame. outside the bladder. My urologist shared all this
with me on the Friday before
I’d studied colon cancer in the The site of the tumor wasn’t July 4. Susan and I had accepted
lab. I knew how important it was surprising: It was precisely where an invitation to go to a wedding
to get regular colonoscopies the radiation seeds had been that weekend, and I figured we
after turning 50. I’d had one, but most concentrated. That radiation couldn’t back out. Of course, I
I was overdue for another. I grew had killed the prostate cancer. But, didn’t want to tell anybody there.
obsessed with the possibility that presumably, it had caused other Instead, I just kept it bottled up
I’d waited too long. cells to mutate—and induced this inside me. By the end of the
new variant. weekend, I was a wreck.
I guess there’s a reason folks We’d been planning to take our
say that doctors make the worst What was so curious was the granddaughter to the beach after
sort of patients. nature of this new cancer. It did the wedding, but I told Susan that
not look at all like a typical male I just couldn’t do it. The thought
Still, when I had a colonoscopy, urological cancer. Instead, it had of fireworks and picnics just didn’t
the results came back as normal. the characteristics of tumors that jibe with my reality any more. She
No cancer. start elsewhere. agreed. We cancelled our plans
for the next week and made new
I then visited an oncologist, The cancer was anaplastic, ones—at a cancer center.
fully prepared for her to tell me which meant it was rapidly The cancer I’d developed was
I had metastatic prostate cancer dividing and “jumbly.” The cells so rare that doctors couldn’t really
(even though this would have were multiplying quickly, and compare my case to others. Still,
been unusual given my low PSA). they’d lost resemblance to normal, one thing was abundantly clear:
Much to my surprise, she didn’t. healthy cells. This was bad news. My circumstances were dire.
Instead, she told me that a biopsy Despite what you may have
of my lymph nodes had revealed When doctors sent a sample of seen on TV or the movies, doctors
a cancer that looked like a form of the tumor out for genetic analysis, don’t tell patients that they have a
the disease known as squamous they found many mutations. These certain amount of time left to live.
cell carcinoma. are changes in the DNA makeup
of the cells. In cancer, the greater
A few weeks later, further the number of mutations, the
testing revealed the origin of the harder the disease can be to treat.
cancer. It stemmed from a tumor

When I shared news
of my diagnosis,
people showered me
with messages of
hope. They prayed for
me. They showed me
countless acts of
kindness.

Winter/Spring 2019 11

Chemotherapy is a blunt instrument;
it floods the body with toxic chemicals
to kill the cancer cells.

But I, more than most, could read This is how I wanted to handle port in my chest, which would
between the lines of what they my disease. I knew I wasn’t yet at allow for the most efficient I.V.
were saying. that point. But I probably wasn’t delivery of the various medications
that far away, either. I would receive. They urged me
I looked at my calendar for the to clear my calendar and focus
rest of the year. Every holiday The tumor was deep in my all of my energy on the 12-week
or meaningful event on there, I urethra. As it grew, it caused me regimen that was about to begin.
realized, might well be my last. It increasing pain and discomfort.
was a bitter pill to swallow. When my physicians performed a Up until that point, other than a
PET scan, they saw that the tumor small circle of family and friends,
I put together a bucket list. It wasn’t alone; my midsection lit I’d kept my condition to myself.
was pretty short. I wanted to see up with metastases like a jack o’ But with the long treatment road
my family: the kids, grandkids, my lantern. The scan also showed that that awaited me, that would have
father, my brother. And I wanted the cancer had spread to my chest to change.
to live until Christmas. and lungs.
I gathered key members of
In cancer, there’s a certain The best hope was not to try to OMRF’s leadership team and
sense of betrayal. dig out all the individual tumors. explained my situation. I didn’t
They were cropping up so fast share every detail; who wants to
Your own cells have literally that surgery would be no more hear about the agonizing night
turned against you. It’s as if there’s effective than shoveling during I spent in the ER because my
an alien creature inside of you. a blizzard. Instead, my doctors primary tumor had blocked my
recommended an aggressive ability to urinate? Still, I didn’t
This idea of something “other” course of chemotherapy. mince words. I explained my
lurking within your body is diagnosis. I told them the long
terrifying. It’s also, I believe, Chemotherapy is a blunt odds I faced.
what’s given birth to all the war instrument; it floods the body with
metaphors that surround cancer. toxic chemicals to kill the cancer I don’t know how this will turn
You have to do battle with cancer. cells. Still, like most poisons, out, I said. And I have no idea
Keep fighting. Never, ever give up. those toxins harm more than the toll it’s going to take on me.
their targets, wreaking havoc So, I need you guys to continue
But, for as long as I’ve studied throughout the body. In particular, precisely what you’re doing.
cancer, I’ve disliked that language. they destroy fast-growing cells. Administrative staff, keep the
Cancer is a disease. Like many This is good when those cells are foundation running in tip-top form.
other diseases, it can respond to cancerous. But it’s not so good Scientists, keep pushing your
certain treatments. The trick is to when they’re blood cells, which research forward.
find the right one. And to be lucky you must regenerate constantly to
enough to have a responsive form stay healthy and alive. I sent emails about my cancer
of cancer. to all OMRF employees, board
When doctors administer members and a broad group of
If your cancer doesn’t respond— chemotherapy, they walk a fine friends. I wanted to be open.
or stops responding—there’s a line. Not enough chemo, and Most people aren’t accustomed
point where continuing to seek the cancer can kill the patient. to dealing with someone facing a
out new therapies is fruitless. Too much, and the chemo can life-threatening illness. They feel
With certain forms of treatment, it devastate the body. awkward around that person, in
can also be punishing. part because they don’t know
I had a few days to prepare for what, exactly, they’re supposed to
In patients, I’d seen many forms treatment. Doctors tested my know about his or her condition.
of courage. One of the most hearing, as one of the potential By laying the facts on the table, I
poignant was the courage to side effects would be hearing loss. hoped to eliminate that barrier.
stop treatment. To recognize that They also surgically implanted a
the best path was to move on to Sure, some would still feel
palliative care. To try to make the uncomfortable around me. I mean,
most of the time they had left.

12  OMRF Findings

how do you make small talk about steroids to prevent inflammation. brief interlude for more fluids,
last night’s game with a guy who Antihistamines to guard against I got a second chemotherapy
might not even be around come any sort of allergic reaction. An drug. Somewhere along the line,
playoff time? extremely potent anti-nausea I received another dose of anti-
drug. Lots of fluids to ensure my nausea medication.
Plus, deep down—no matter kidneys were protected. Then
how irrational we know it to be— drugs to drain excess fluids. All told, I spent about eight
there’s a superstitious, frightened hours in the infusion suite,
part of each of us. We’re scared Even though I’m a physician, watching as I.V. bags slowly
of catching what that person I didn’t ask my doctor a lot of drained their contents into me.
has. You look at me, and you’re questions about my treatment When one emptied, a nurse came
confronting your own mortality. regimen. That was by design. I and switched it for another. Here
You think, that could be me. didn’t want to obsess over every and there, I’d drift off, drowsy
little detail, I told myself. But if I’m from the antihistamines. But,
My treatment began on a being honest, there was a simpler happily—and surprisingly—I did
Monday. I spent the morning explanation: I was scared. not feel nauseated.
getting pumped full of
medications to prepare me A little after noon, I received At around 4:30, my last I.V. bag
for chemotherapy. There were my first chemo infusion. That emptied. I was ready to go home.
took about an hour and a half to
drip into my body. Following a Just one more thing, my doctor
said. She handed me a small
backpack with a clear, rubber
tube snaking out. She hooked
the tube to the port in my chest.
This was oncology’s version of a
to-go order. Inside was a pump
that would push a third form of
chemotherapy into me while I ate
dinner with Susan, relaxed with a
book and, finally, slept.

It was a long, exhausting day.
The rest of the week followed
a similar path: I.V. medications
at the doctor’s office during the
day, then pumped in through the
backpack at night. On Friday, after
I received a final injection of a
drug to boost my white-blood-cell
count, I let out a deep breath. I’d
finished my first round of chemo.
Other than the port in my chest,
which was a little weird, I didn’t
feel any different than normal. I
had energy. No queasiness.
That continued for the next two
weeks, during which I recovered
from my treatment. Each day, I
took a handful of pills. When my
hair started to fall out, I decided to
cut to the chase. I shaved it all off.
I would undergo three more
rounds of chemotherapy like this:
a week of treatment followed by
two weeks of recovery. When my
doctor examined me at the mid-
point of this process, she voiced
cautious optimism. The once-
swollen lymph nodes in my groin
had shrunk.

Winter/Spring 2019 13

These past 18
months have
given me a fresh
appreciation for
those who keep
searching out
new approaches
for treating
disease.

That’s a good sign, she said. The urinary pain and discomfort As the date of the scan neared,
Still, we wouldn’t know anything had vanished, and the swelling in the frequency of these episodes
concrete until I had a full-body my midsection seemed to have picked up. It’s not fair, I’d hear my
scan. For that, we’d wait until disappeared as well. Other than inner voice say. Sometimes, it
the end of the 12-week regimen. occasionally being caught off screamed, Why me?!
By that time, there’d be a clear guard by a reflection in a mirror of
picture of whether the drugs were a guy who looked like Mr. Clean, I But, intellectually, I knew cancer
working. Or not. could almost forget I had cancer. was never fair. I mean, who
deserves this disease?
A dear friend of mine has Almost.
lived with lymphoma for many Because there were also You do your best to control
years. So, he’s no stranger to times when I’d be overcome by the odds. But you don’t get a
the periodic scans that cancer intense sensations of dread. There free pass just because you don’t
patients undergo. wouldn’t be any particular trigger I smoke. Or because you exercise
could identify. It happened at the and eat well. Or even because
It is, he says, like having most unpredictable moments. you’ve devoted a big chunk of your
someone lead you into a prison I’d be having a routine career to trying to understand and
yard and hand you a cigarette. conversation with someone, find new treatments for cancer.
Then you’re blindfolded and lined and—bam!—I’d be seized with a
up against a wall. You stand there, crushing sense that something The nurse found the vein in my
just waiting for the bullet. But, terrible was about to happen. arm and inserted the I.V. needle.
instead, a voice says, “Not today.” My heart thrummed. I could feel Moments later, a solution of
rivulets of sweat forming on my glucose—sugar—laced with a
At least I hoped that’s what the body. Breathe, I’d say to myself. radioactive isotope began to flow
voice would say. Just breathe. into my body.

14  OMRF Findings

Once we’d waited long I was done with chemotherapy, Each of the forms of therapy
enough for the radioactive sugar at least for now. Instead, my I’ve received came from laboratory
molecules to circulate throughout physicians recommended follow- discoveries like those that
my tissues, I laid down on a up treatment with a drug called scientists at OMRF make every
sliding tray. For the better part Lynparza. It’s a therapy primarily day. My doctors’ ability to tailor
of the next hour, that tray carried used to treat ovarian cancer. my treatments to my particular
me, ever so slowly, through However, genetic sequencing form of the disease was a direct
a doughnut-shaped hole into showed my cancer carried a result of breakthroughs in DNA
the belly of a massive machine mutation much more commonly sequencing in the last decade. The
known as a positron emission found in ovarian tumors. So, drug I’m now taking to keep my
tomography (PET) scanner. my doctors hoped, a handful of disease at bay reached the market
these pills each day would keep just four years ago.
A PET scan detects cancerous my disease in check for the
tumors. It does so by measuring foreseeable future. I’m alive today because of the
how cells deal with the sugar changed landscape of cancer
solution: Cancer cells retain it About a year has passed since research and treatment. Indeed,
longer than normal ones. The that moment. Happily, my cancer I shudder to think whether I’d be
radioactive particles linked to has shown no signs of returning. here had my cancer developed
those sugars then create a visible Still, I don’t consider myself cured. even a few years earlier.
map of that activity. The more
spots light up, the more cancer. One day, I expect the disease Although I’ve spent most of
to come back. I’ll feel a lump. A my adult life in the lab, these
As I lay motionless in the chilly dull pain that doesn’t seem to go past 18 months have given me a
room, I couldn’t feel the scanner away. Or, perhaps, at one of those fresh appreciation for research.
searching my every nook and periodic PET scans I still undergo, They’ve driven home why it’s
cranny. My veins seemed no they’ll tell me, “Well, Steve, the so important to keep searching
different than when they didn’t news isn’t so great this time.” out new approaches for treating
have radioactive substances disease. And they’ve instilled in
coursing through them. When that happens, I’ll try a me a profound gratitude for all
new therapy. Chances are, it won’t those who show the foresight and
Still, I knew that this moment be as effective as my previous generosity to support scientific
was different. treatments. It may not work at all. investigations they know cannot
benefit them—only, perhaps,
Did life’s journey have another At some reasonable point in those who come later.
leg or two remaining? Or had I the process, I’ll say uncle. I won’t
reached the end of my travels? throw any Hail Marys. Instead, I’ll Still, the most wonderful—yes,
savor the time I have left. wonderful—part of having cancer
Of course, nothing inside me has been the unexpected gifts it’s
would be altered by what the scan But I hope that day is a long, brought me.
showed. But everything about long way off.
my world would be transformed When I shared news of my
when the doctor announced those In the meantime, I’ve enjoyed diagnosis, people showered me
results. It’s one thing to be dying. having hair again. And celebrating with messages of hope. They
It’s quite another to know it. Christmas—plus New Year’s, my prayed for me. They showed me
70th birthday, Susan’s birthday and countless acts of kindness.
I can recall few times in my my granddaughter’s graduation. At
life more stressful than awaiting this point, I’m deep into uncharted That compassion helped give
those test results. And few territory. I’m living days I never me strength in grim moments.
moments of greater joy than expected to see. And now, every day, it reminds me
when I received them. to do the same for others.
With each sunrise, my outlook
You’re in remission, my doctor has grown brighter. I’ve grown In our home, Susan and I
said. Complete remission. so bold as to start adding to the recently hung a photo of the two
bucket list I put together when I of us dancing. It was taken last
I gulped, incredulous. was first diagnosed. fall. In it, I’m bald as a cue ball.
Complete remission? And I couldn’t look happier.
My primary tumor had shrunk I’d like to float the Grand
remarkably. The PET scan also Canyon. See the Aurora Borealis. That image perfectly captures
showed that the tumor was Clink a glass of bubbly with Susan my relationship with cancer. I
essentially dormant, so my on our 50th wedding anniversary know it’s a part of me. But I’m not
doctors saw no need to remove in June. going to let it stop me from living
it. In the other parts of my body my life.
where the cancer had previously That any of this is even possible
spread, diseased cells were no is a tribute to medical research.
longer detectable.

Winter/Spring 2019 15

By Shari Hawkins

16  OMRF Findings

Just walk it off, David Key told himself.

He trudged along the roadside, hoping to outpace
his pain. The gravel crunched under his feet, his steps
kicking up faint clouds of dust in the moonlight.

Winter/Spring 2019 17

Not much happens in the Researchers know little about Montgomery, who studies the
wee hours in Oil Center, a rural what triggers sarcoidosis. It disease in her lab at OMRF.
community in southeastern seems to start in the immune
Oklahoma. And middle-of-the- system, eliciting rampant Often, she says, patients like
night journeys weren’t the norm inflammation. The disease also Key can ping-pong from physician
for Key, then 41 and owner and causes lumps of immune cells— to physician before one accurately
operator of a construction and called granulomas—to form in identifies their condition. “It’s a
insulation business. But this was organs throughout the body. diagnostic odyssey. It can take six
no ordinary evening. These tumor-like lumps can years, eight years, even longer.
appear in the eyes, liver, heart, That’s the story we hear most.”
Around 1 a.m., he’d awakened skin and brain and most often
with stabbing pains in both his are found in the lungs. They also Even a definitive diagnosis
armpits. “It felt like someone give the disease its name, as the brings little relief. There is no cure,
had propped me up on a couple growths were initially be believed and while the disease can go into
of broom handles,” Key says. to be a form of sarcoma, a type of remission on its own, no drug
“The pain was excruciating.” He cancerous tumor. has been shown to definitively
stepped outside to clear his head modify disease progression.
and avoid waking his wife and The lumps, though, are not While doctors are sometimes
two daughters. When a short walk cancerous. However, they cause able to control symptoms with
failed to bring relief, he climbed in Key intense bouts of pain. And medications, the process of
his pickup and drove to the E.R. while uncomfortable, the fact that managing their condition can
they are not in his heart or lungs become a full-time job for those
Key didn’t know it then, but that is fortunate. If too many of them with sarcoidosis.
night a dozen years ago would form in a single organ, they can
mark the end of an era. No longer cause the organ to malfunction or “Few specialists see
would he be a healthy father, even fail. This is the reason that sarcoidosis, so they aren’t sure
husband and business owner who one in 14 people with sarcoidosis what to make of it. And there’s no
raced motorcycles competitively. eventually die from the illness. central place for these patients to
Instead, suffering and disability go,” Montgomery says. “Instead,
would come to rule his life. Sarcoidosis can strike anyone, they have a cardiologist. A
but it disproportionately affects pulmonologist. An eye doctor, a
“I have such pain in my chest,” African Americans: Disease neurologist, a dermatologist. They
he says. Often, it goes on for incidence has been reported as see all of them.”
days. “It takes me to my knees.” high as 39 in 100,000 among
African Americans, versus five in This treatment landscape—
He cycled through hospitals 100,000 for Caucasians. African confusing, lonely, bereft of
and clinics. No matter what Americans are also 10 times more promising paths forward—is
medications doctors prescribed, likely to die from it than their what drew Montgomery to
his condition worsened. He was European-American counterparts. sarcoidosis. A geneticist by
wracked with uncontrollable training, she’d spent more than
tremors. Neurological problems. Mortality can result from a decade working to understand
He could no longer run his respiratory, neurologic or liver what predisposes certain people
business, so he changed jobs. failure. But the most common to diseases such as lupus and
Finally, after a pair of strokes, he causes of death are cardiac cancer. But while many other
was forced to go on disability. conditions, which claimed the scientists around the world were
lives of the two best-known focused on finding the roots of
Still, when Key arrived at the sarcoidosis sufferers: comedian these conditions, only a handful
E.R. that night in 2006, physicians Bernie Mac and NFL Hall of Fame were looking at sarcoidosis.
didn’t know what was wrong. defensive lineman Reggie White.
They gave him some pain pills and Montgomery had been
sent him home. Most patients experience lung peripherally involved in a research
symptoms, including chest pain, project on the disease in graduate
But within weeks, after shuttling dry cough or shortness of breath. school. She stayed connected to
to a number of different hospitals, Other symptoms can include it when she joined the faculty at
Key learned a name for his pain. fatigue, fever, joint pain, skin Case Western Reserve University
It was a word he’d never before rashes and sores. in Cleveland and, subsequently,
heard. But in the coming years, when she moved her laboratory
he’d grow to know it well. Because of the disease’s rarity to OMRF in 2008. Along the way,
and wide range of effects, doctors the project ran out of funding.
Doctors told him he suffered often struggle to identify it. Montgomery saw two choices: let
from a disease called sarcoidosis. “Unless patients’ first symptoms it die, or go and get a new grant.
are in the lungs, they’re usually
misdiagnosed,” says Dr. Courtney In 2009, she secured funding
from the National Institutes of

18  OMRF Findings

David Key had sarcoidosis
never heard of
Photo: Dan Morgan
sarcoidosis—
until the rare
disease stole

his health.

Winter/Spring 2019  19

Health. “With that grant, we therapies. “But if we don’t do this an autoimmune disease or it’s an volunteer
were able to begin delving into kind of research,” she says, “we infectious disease,” Montgomery
the genetic roots of the disease,” know things won’t improve for says. “Our preliminary findings are
she says. She and her OMRF these patients.” strengthening the argument that
research team focused on African- this disease has components of
American families, since they bore In early 2018, Montgomery both. We’ve learned that just from
a disproportionate weight opened the Sarcoidosis Research our first round of recruitment.”
of sarcoidosis. Unit at OMRF. “Within 48 hours,
we had 20 people respond about For most participants, their visits
While the work was, to an participating,” she says. “The culminate in face-to-face visits
extent, fruitful, she ultimately disease strikes more Oklahomans with Montgomery. In almost every
realized there was only so much than anyone imagined. We just case, she says, meetings end in
she could learn from patient had to go on faith that we’d find tears, hugs or both.
samples gathered more than a them, and we have.”
dozen years before. To make real “We understand them and what
headway, her team needed fresh Once enrolled in the study, they’ve gone through to get here.
samples. That meant connecting participants undergo a screening We give them hope, because
with patients. process, complete questionnaires we’re working hard for them.
and donate a small blood For many, it’s refreshing to talk
Although any research sample to be used for research. to someone, finally, who doesn’t
Montgomery and her team Volunteers are also asked to think they’re crazy. They will drive
did would not directly benefit provide consent to review medical for hours just for the chance to tell
the participants, Montgomery records and request previous us about their personal experience
hoped they’d be willing to help. biopsies related to the disease. with sarcoidosis.”
“By studying what’s going on
at a genetic level in patients No treatment is administered That time with patients has
with active disease, we hope to at OMRF, but the information also proven essential to steering
identify environmental triggers— gathered helps give researchers Montgomery’s studies in the lab.
pathogens, allergens, things like a clearer picture of the disease
that—that initiate sarcoidosis and how it progresses. The blood “Their stories have guided
onset,” she says. Ultimately, that samples are examined in the the science from the start,”
work might point scientists to an laboratory to look at the genetic she says. “Even as different
effective treatment. “Much like makeup of patients versus healthy as their conditions may seem,
when researchers discovered controls—individuals without a I find commonalities in their
insulin could control type 2 sarcoidosis diagnosis—to help narratives. I like to take my time
diabetes, we’re hoping to find a scientists identify triggers or and get to know them, hear their
protein we can either supplement biomarkers for the disease. experiences. At the end of the
or alter to treat sarcoidosis.” day, it lets me do what I do best:
“Traditional thinking on problem-solve.”
Of course, there’s no guarantee sarcoidosis has always been
the work will lead to new broken into two camps: either it’s Montgomery and her team
are using sophisticated genetic
techniques to analyze what’s

Within 48 hours Photo: Steve Sisney
of opening
OMRF’s
Sarcoidosis
Research Unit,
says Dr. Courtney
Montgomery,
“We had 20
people respond.”

20  OMRF Findings

For more But then a physician thought his chest and underarms. When his
information or to he recognized Key’s symptoms. disease flares, he could swear he’s
take part in the A subsequent biopsy of lymph having a heart attack.
study, call (405) nodes removed from Key’s chest
271-2504 or email proved the hunch: sarcoidosis. For Key, a vital part of his ability
[email protected]. to persevere has come from the
“Boom. Everything changed,” online support he’s received from
going on in patients. “We’re Key says. He started on a steroid other sarcoidosis patients. “It’s
also trying to look at things that helped tamp down the really good to be able to share with
chronologically to learn what tells inflammation that had run amok somebody who knows what you’re
the blood to migrate to a specific in his body. In time, though, he going through,” he says. “We try to
place and create a granuloma,” developed new symptoms. hold each other up and be there for
she says. “We just now have the each other. There’s no cure and no
technology to do that.” First, it became hard to write. perfect way to take care of us, so
“I shook so hard, it was like I had we talk about everything. Doctors,
She also aims to educate Parkinson’s. I couldn’t eat with medications, depression, flares.”
those on the front line of treating a spoon or eat chips and salsa,
the disease. “We completely anything I had to hold,” he says. A Facebook group that started
understand how challenging this “Then I got what I called ‘needle with a few hundred members has
is for some clinicians,” she says. pains,’ where it felt like someone grown to almost 5,000. Through
“There’s no place for a general was poking me with ice picks all it, he’s befriended patients as far
practitioner in a small town to over my body, on my ears, legs, away as Africa and Australia. “One
get training on a rare disease like tongue, hundreds of times a day.” just got a lung transplant. Others
this one, so we want to bring the talk about getting infusions and
training to them.” At his doctor’s urging, he other treatments.” A young disease
eventually sold his business and sufferer awaiting a lung transplant
Montgomery hopes to enroll took a desk job. He enjoyed the died recently, he says. “It can be
200 patients in the study. She work, but sometimes he’d get hard, but it helps to have them for
knows that’s a steep order for disoriented and couldn’t find his support, because everyone with
a rare disease, but having large way back to his office. Other this disease has a lot of questions.”
numbers of research subjects is times, he’d forget how to log into
key to making new insights. the computer system he’d used It was through an online
for years. connection that Key found OMRF.
The ultimate goal of the work, Another member of the Facebook
she says, is simple. “All we do In the summer of 2017, Key group is a sarcoidosis patient from
is pointed toward changing the suffered a stroke. A month later, Tulsa, and they began chatting
treatment landscape for patients.” he had a second one. With the on the phone from time to time.
increasing toll sarcoidosis was (They’ve never met.) One day,
The night of David Key’s midnight exacting on his body and mind, she mentioned OMRF and its
walk, emergency room staff had he could no longer meet the Sarcoidosis Research Unit. She
no answers for his agony. “I think demands of the workplace. He explained what it did.
they thought I was just after pain took long-term disability.
pills, you know, like an addict.” As Key listened, something
“I got in a big depression over dawned on him. This disease had
In the ensuing week, surgeons that,” he says. “I had worked all kept him powerless for so long.
removed his gall bladder. When my life and really enjoyed it. Then But here was an opportunity to do
that did nothing to ease his all of a sudden, I couldn’t work something. To make a difference.
suffering, another physician anymore. It’s really been rough.”
diagnosed him with pancreatitis. He drove to Oklahoma City. He
But, again, treatments failed to Despite the physical challenges, filled out questionnaires detailing
help. “I lost weight real fast. I Key still prides himself on keeping his history with the disease, his
looked horrible.” Things got so bad his yard in order. It might take medications. He donated blood.
that doctors suggested Key spend two or three days to finish, but he
time with his family and get his keeps things mowed and tidy the It’s been almost a year since
affairs in order. best he can. He’s also working on then. Key understands that
some projects around the house researchers are working with the
and in the garage. samples and information he—and
others like him—provided. He
Since the strokes, doctors also knows what he’s given likely
have largely managed to control won’t help him directly. If there are
his symptoms. Steroids keep answers, they’ll come slowly, and
the inflammation in check, and in little pieces.
he takes a laundry list of other
medications for the tremors, Still, he says, “If it can help
pain, depression and neurological somebody down the road, it’s
issues. Still, he continues to worth it.”
experience near-continuous pain in

Winter/Spring 2019   21

BACKSTORY

You’re Doin’ Fine, ‘Oklahoma!’

How our state’s namesake musical gives back to research at OMRF

The line at the St. rough-and-tumble setting In 2018, the show musical to his
James Theatre formed of Oklahoma territory. celebrated its 75th four siblings.
early on April 1, 1943. anniversary. The Riggs’ brother
As it grew, the New York Critics had expected milestone met with William Edgar
City police were called the Western-themed much fanfare and, lost his wife
in to control the throng. show to be a flop, and as usual, many new to heart disease
Word had spread fast many panned it even productions. Those and his daughter Lynn Riggs
about the show that before it opened. But included a stripped-down, to cancer, so upon his
had opened the night that April 1 performance off-Broadway version death in 1977, he donated
before to a spotty—but would be the second in in Brooklyn and even his portion to support
enthusiastic—crowd. what would ultimately an Oregon production research on those
Patrons were eager to become a run of 2,212 where the central couple diseases at OMRF. The
shell out $4.80 to enjoy nights on Broadway. were women and the payments will continue
Richard Rodgers and secondary romance was as long as “Green Grow
Oscar Hammerstein II’s between two men. the Lilacs” remains
first collaboration. under copyright.
All told, the landmark
“Oklahoma!” offered a show is still performed “Even though OMRF
whole new take on the about 700 times a year. wasn’t yet born when
musical genre. Instead And every time the Lynn Riggs wrote
of a string of random curtain goes up on Curly, his play,” says OMRF
production numbers, it Laurey, Ado Annie and Vice President of
told in song the simple Aunt Eller, it helps OMRF. Development Penny
story of a young girl and Voss, “I hope he’d find
her two suitors, a farmer Through an estate it fitting that his work
and a cowboy, in the gift, OMRF receives benefits Oklahoma’s
one-quarter of 1 percent very own homegrown
22 OMRF Findings of box-office royalties research institute.”
for the musical. The
gift traces its roots to Grassroots support
Claremore native Lynn from Oklahomans in all
Riggs, who in 1931 77 counties helped make
penned “Green Grow the OMRF a reality. “They’re
Lilacs,” the play Rodgers the same kind of people
and Hammerstein used portrayed in the musical:
as the basis for their strong, caring, forward-
musical. Hammerstein looking,” says Voss. “We
wrote that he “kept many still see that spirit in our
of the lines of the original donors today.”
play without making any
changes in them
at all for the simple
reason that they could
not be improved on.”

When Riggs died, he
willed equal shares of his
1 percent royalty on the

In 2007, Tony winner (and Oklahoma native) Kelli
O’Hara helped celebrate the state’s centennial with a
Lyric Theatre production of “Oklahoma!”

Royalties from
performances of
“Oklahoma!” have
generated more
than $700,000 for
heart disease and
cancer research
at OMRF.

Winter/Spring 2019   23

Non-Profit Org

U.S. Postage

PAID

Permit No 639
Oklahoma City, OK

825 N.E. 13th Street
Oklahoma City, OK 73104

/OMRFOK @OMRF /OMRF

A Joyful Noise

On holidays, community volunteers pitched in to make the season bright for patients
in OMRF’s Research Hospital. In 1958, this accordion ensemble shared the Christmas
spirit with a concert for hospital staff and patients.